Ostomy Telehealth For Cancer Survivors
Phase: NA
Conditions: Colostomy Stoma
Sponsor: University of Pennsylvania

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PRIVILEGED COMMUNICATION 
FOR INVESTIGATIONAL USE ONLY 
 
 
OSTOMY TELEHEALTH FOR CANCER SURVIVORS  
 
NCT#02974634 
 
STUDY CHAIR: 
 
 
Robert S. Krouse, MD 
 
Department of Surgery, 
University of Pennsylvania 
 
3400 Spruce St., 4 Silverstein 
Philadelphia, PA 19104 
 
Phone: 215-823-5880 x6042 
 
FAX: 215-823-4309 
E-mail: robert.krouse@va.gov 
 
 
 
 
 
 
 
 
 
 

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PARTICIPANTS 
 
 
 
 
UNIVERSITY OF PENNSYLVANIA 
 
ZULEYHA CIDAV,PHD; CO-INVESTIGATORNANCY J. TALLMAN, RN, BSN; CO-
INVESTIGATOR 
AVE MARIA PRESTON, MSN, RN, CWOCN, ACNS-BC; OSTOMY NURSE 
MATTHEW CIABATTONI, BSN, RN-BC, CWOCN; OSTOMY NURSE 
ROGER IVERSON; PEER OSTOMATE 
FRANK PASSERO, MD; PEER OSTOMATE 
DEBORAH DONAHUE; PEER OSTOMATE 
MARCIA GRANT, PHD, RN, FAAN; CONSULTANT 
MARK C. HORNBROOK, PHD; CONSULTANT 
JUDITH H. HIBBARD, DrPH, MPH; CONSULTANT 
 
CITY OF HOPE 
 
VIRGINIA SUN, PHD, RN; SITE PI 
LILY LAI, MD; CO-INVESTIGATOR 
 
YALE UNIVERSITY 
 
RUTH MCCORKLE, PHD, RN; SITE PI 
ELIZABETH ERCOLANO, RN, MSN, DNSc; CO-INVESTIGATOR 
 
UNIVERSITY OF ARIZONA 
 
CHRISTOPHER S. WENDEL, MS; BIOSTATISTICIAN 
RONALD WEINSTEIN, MD; CO-INVESTIGATOR 
 
 

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TABLE OF CONTENTS 
PAGE 
 
1.0 
Schema 
4 
2.0 
Objectives 
5 
3.0 
Background 
5 
4.0 
Significance 
7 
4.1 
Inclusion of Women and Minorities 
7 
5.0 
Eligibility Criteria 
8 
6.0 
Stratification Factors 
8 
7.0 
Registration Guidelines 
8 
8.0 
Mailed Packets 
10 
9.0 
Study Plan 
13 
10.0 
Study Calendar 
19 
11.0 
Criteria for Evaluation and Endpoint Analysis 
19 
12.0 
Statistical Considerations 
21 
13.0 
Stakeholder Oversight 
25 
14.0 
Bibliography 
27 
15.0 
Appendices 
31 
 
Appendix 1 Curriculum  
 
 
Appendix 2a COH-QOL-CRC (full survey; baseline) 
 
Appendix 2b COH-QOL-CRC (scaled items only; post-intervention and followup)  
 
 
Appendix 3 HADS 
 
 
Appendix 4 Patient Activation Measure 
 
 
Appendix 5 Self Efficacy Survey 
 
 
Appendix 6 Ostomy Knowledge Survey 
 
 
Appendix 7a Burden of Ostomy Care Survey (full survey; baseline and followup) 
 
Appendix 7b Burden of Ostomy Care Interim Survey (shortened survey; after session completion)  
 
Appendix 8 Connection to Telehealth Sessions 
 
 
Appendix 9 Group Rules 
 
 
Appendix 10 Goal Setting 
 
 
Appendix 11 Study Form 
 
 
Appendix 12 Ostomy Resource Compendium 
 
 
Appendix 13 Telehealth Equipment Loan Agreement 
 
 

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1.0 
SCHEMA 
 
 
 
 

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2.0 
OBJECTIVES 
 
2.1 
Primary Objectives 
 
Aim 1: Using our enhanced telehealth techniques, determine if patient activation, self-efficacy, 
ostomy-related knowledge, and HRQOL will be improved and sustained over time in the online 
interactive communication Ostomy Self-Management Telehealth program (OSMT) curriculum 
compared to a usual care (UC) group. 
Hypothesis 1.1: Taking into account time since surgery: 
1.1.1 Survivors in the OSMT group will have greater improvement in patient activation 
compared to UC. 
1.1.2 Survivors in the OSMT group will have a sustained improvement in patient activation. 
1.1.3 In survivors in the OSMT group, higher attendance levels will be associated with 
increased patient activation. 
Hypothesis 1.2: Taking into account time since surgery: 
1.2.1 Survivors in the OSMT group will have greater improvement in self-efficacy, ostomy-
related knowledge, and HRQOL compared to UC. 
1.2.2 Survivors in the OSMT group will have a sustained improvement in self-efficacy, 
ostomy-related knowledge, and HRQOL. 
1.2.3 In survivors in the OSMT group, higher attendance levels will be associated with 
increased self-efficacy, ostomy-related knowledge, and HRQOL. 
 
2.2 
Secondary Objective(s) 
 
Aim 2: Determine the differences in ostomy-related medical care utilization and family 
financial burden imposed on survivors between OSMT and UC groups. 
Hypothesis 2.1: OSMT telehealth subjects will use fewer ostomy-specific family resources 
in the 6 months after OSMT compared to UC subjects. 
Hypothesis 2.2: OSMT telehealth subjects will use fewer ostomy-specific health care 
services in the 6 months after OSMT compared to UC subjects. 
Question 2.1:  What is the difference in the overall levels of ostomy-related family financial 
burden between OSMT and UC groups? 
Question 2.2:  What are types and levels of effort of OSMT intervention personnel and 
specific equipment, supplies, and informatics support required to implement and operate a 
successful OSMT program; what are participants’ levels of use of ostomy-specific health care 
services and supplies; and what are the time and in-home requirements for participating in 
OSMT for survivors and their family caregivers. This information is required for replicating our 
OSMT intervention in the event that we find it improves the primary and secondary outcomes 
of OSMT participants. 
 
 
3.0 
BACKGROUND 
An ostomy is the externalization of a tubular structure in the body. In the context of this 
proposal, it relates to intestines externalized to the abdominal wall. It adversely affects health-
related quality of life (HRQOL) in a diverse population of cancer survivors. For cancer, ostomies 
are most commonly placed for rectal cancers, followed by urinary bladder cancer. Ostomies 
may be needed for other cancers related to bulky or metastatic disease, or in emergencies. In 
addition, ostomies may be placed on a temporary or a permanent basis. Temporary ostomies 
may be created in emergencies, such as perforation or obstruction due to tumor, or in planned 

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procedures, as with a low rectal resection for cancer where an ostomy is placed to “protect” a 
new anastomosis while it heals. Temporary ostomies may become permanent as a result of 
underlying comorbidities, need for other treatments related to cancer, or poor outcome of 
anastomosis (leak or stricture). Peri-operative needs are the same regardless of ostomy 
permanence; survivors should receive clear, systematic, evidence-based ostomy self-
management instruction and support. 
Cancer survivors with ostomies should have a confirmed level of self-management skills, as well 
as a commitment to self-management. Cognitive restructuring, problem solving, and self-
efficacy/locus of control are essential tools for effective self-management. As in most chronic 
conditions, this tends to be long-term, complex, and multidimensional. Hit-or-miss ostomy care, 
nurse counseling, and community referral have been the primary modes of self-management 
education and support in the peri-operative period. Clearly, ostomates face many obstacles 
in coping with their condition, not least of which is medical care that often does not meet 
their needs for effective information, clinical management, psychological support, and 
patient activation.1-6 Ostomates and their families must engage in ostomy self-management, 
make behavior changes, and adjust to the consequences of their condition, becoming the 
principal caretakers and navigators. Preparation of the survivor and unpaid designated 
caregivers (CGs) (usually family members) is important to assure optimal functioning and 
HRQOL, as well as to prevent or ameliorate ostomy-related complications and associated 
health care utilization.7 Multiple communication issues make it difficult for ostomy survivors to 
access resources for improving their self-management, and undermine opportunities to improve 
and sustain HRQOL. These resources include lack of consistent follow-up, travel issues, lack of 
surgeon focus on ostomy-related problems, and lack of ostomy nurse clinic resources. 
Ostomies are associated with multiple HRQOL difficulties.8-12 Ongoing problems include 
pouching care, travel out of the home, social interactions, intimacy, and acceptance 
of/satisfaction with appearance. Studies document persistent challenges including sexuality,11,13-
26 psychological problems,7,8,10,11,15,26 and interference with work,17,28,29 and recreation and 
sporting activities.17,30-33 However, improved self-efficacy eases psychological and social burden 
of ostomies.34 No reports have been published on the results of a systematic ostomy self-
management program to ensure optimal post-operative care, including adaptation, self-
management, and ostomy comfort. 
Usual Care. Usual care (UC) in peri-operative and long-term settings is not standardized for 
ostomy patients. Usual care does not provide any formal, reproducible training for patients or 
CGs. It typically consists of an Ostomy Care Nurse (OCN) who works with patients and CGs 
concerning technical issues (fitting, emptying, supplies, surrounding skin care, etc.) while the 
new ostomate is still an inpatient. Therefore, prior to discharge, most survivors have begun 
learning to care for their ostomy but will continue learning (primarily on their own) after 
discharge. For some survivors, training may result in 1 - 2 extra hospital days, although patients 
are often required to leave hospitals earlier than in the past, leaving less time to adequately 
train. Additionally, early education is challenging since the bowel or bladder adaptations to 
surgical changes occur over a matter of weeks and months. Survivors are not typically given 
specific appointments to a wound care/ostomy clinic. Survivors with ostomies may receive 
ostomy care or advice in the context of other scheduled clinic appointments, and then only on 
an “as-needed” basis. Often, there are no recurring support groups or formal peer support 
systems for survivors with ostomies, and little or no matching of specific products to individual 
patient needs. 
Support Groups. Some communities or health care systems provide contact information of a 
local ostomy support group chapter, but in our research group’s R01 study of Kaiser 
Permanente (KP) cancer survivors, only 22% of the ostomates reported attending available 

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ostomy support groups. In addition, even where a group is attended, the content is neither 
systematic, nor based on self-efficacy and skills enhancement, as in our proposed intervention. 
High levels of consumer satisfaction and outcome evaluations have documented the value of 
cancer support groups.35 Research conducted on face-to-face support groups has revealed 
positive outcomes.35 However, this research also reveals variations in rates of participation and 
attendance. Slevin and colleagues provided evidence that physician and nurse-led support 
groups were preferred by patients, but at least 20% of those invited did not join the group, and 
another 20% dropped out before the last session.36 These numbers were approximately the 
same for Goodwin et al.—66% participated, and 19% dropped37—and by Classen et al.—20% 
declined to participate and 20% dropped.38 In contrast to the live groups, on-line groups 
conducted by CancerCare in New York City have had tremendous success recruiting people to 
virtual telephone groups and having them persist when multiple sessions were conducted.39 
Each of the four 1-hour long sessions on “Living With, Through and Beyond Cancer” had more 
than 3,000 callers. Clearly, participation through tele-communication can be more successful for 
cancer survivors than attending face-to-face support groups. 
 
4.0 
SIGNIFICANCE 
Over one million individuals in the U.S. have ostomies.40 The American Cancer Society 
estimates 39,610 rectal cancer cases and 74,000 bladder cancer cases will be diagnosed in 
2015.41 Of these, at least 30,000 will receive ostomies, and an additional unknown number due 
to gynecologic, other gastrointestinal tumors. The HRQOL impact is tremendous and greater 
than with many other cancer treatments. An ostomy is often a prolonged or lifelong disabling 
problem for cancer survivors. The adaptation period is quite variable. In our R01 KP study, 18% 
of participants took at least one year, or never felt comfortable, in their ostomy care. Importantly, 
many patients cannot attend self-management programs or patient groups for a myriad of 
reasons, including distance to travel, monetary outlays, comorbidities making travel difficult, or 
lack of access to transportation. In addition, a national shortage of OCNs means patients with 
an ostomy, whether newly placed or a long-term issue, receive little help. It is imperative to 
study interventions for these cancer survivors aimed to limit family financial burdens, decrease 
medical care use, and improve well-being. 
 
4.1 
Inclusion of Women and Minorities 
This study was designed to include women and minorities, but was not designed to measure 
differences of intervention effects.  The anticipated accrual in the ethnicity/race and sex categories 
is shown in the table below. 
 
Estimated Final Racial/Ethnic and Gender Enrollment Table 
Race 
Male (N) 
Female (N) 
Total (N) 
American Indian/Alaska 
Native 
0 
0 
0 
Asian 
4 
6 
10 
Black/African-American 
19 
21 
40 
Hawaiian/Pacific Islander 
0 
0 
0 
White 
45 
47 
92 
Multi-race 
1 
3 
4 
Ethnicity 
Male (N) 
Female (N) 
Total (N) 
Hispanic (Latino/Latina) 
8 
10 
18 

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Non-Hispanic 
63 
69 
132 
 
 
5.0 
ELIGIBILITY CRITERIA 
 
5.1 
Eligibility criteria 
1. Cancer survivors over 21 years of age having undergone a procedure that needed 
an intestinal stoma (fecal or urinary). Survivors with temporary ostomies will be 
included. 
2. All participants must have a full understanding of the protocol and be able to sign an 
informed consent form. 
3. Having an identified caregiver is not a requirement for eligibility. 
4. All participants will attend their first training session at least six weeks after their 
operation. 
5. There is no maximum time since surgery. 
 
 
6.0 
STRATIFICATION FACTORS 
Potential stratification factors are gender, medical center site, and fecal vs. urinary ostomy.  
Gender and site will be stratified in the randomization process, whereas ostomy type will be 
explored in the analysis. 
 
7.0 
REGISTRATION GUIDELINES 
 
7.1 
Registration Timing 
Patients must be registered by the start time of the first intervention session. 
 
7.2 
Investigator/Site Registration 
 
7.2.1 Study Accrual process 
7.2.1.1 Patient Identification Patient identification will be variable by site as outlined below. For 
patients who are asked to participate, a log will be kept without any identifiable information. This 
log will simply record whether patient accepted or declined. If declined, the reason for declining 
will get recorded.  
 
7.2.1.2 University of Pennsylvania 
UP Research Coordinator will use lists of patients from EPIC records in the Colorectal (under 
the direction of Dr. Najjia Mahmoud), Urology (under the direction of Dr. Bruce Malkowicz), and 
Ostomy clinics (under the direction of WOCNs Ave Preston and Matthew Ciabattoni) that have 
undergone an ostomy procedure. In addition, patients who are seen in these clinics will be 
asked if they are willing to be contacted regarding this study. These lists include patient names, 
uncoupled from clinical data. 
 
7.2.1.3 City of Hope 
Study CRA will work with site-PI (Dr. Sun) to identify appropriate candidates for the study. The 
CRA will work closely with the Departments of Medical Oncology and Department of Surgery to 
identify eligible participants. She will attend key meetings (ambulatory clinics, tumor boards) on 
a weekly basis and work with attending MDs to identify eligible participants. The attending MD 
will introduce the study to patients and obtain their permission for the CRA to contact them. With 
permission, the CRA will contact eligible participants and explain the study purpose, answer 

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questions, and ascertain interest in participation. Study objectives and procedures, and their 
attendant risks and discomforts, will be carefully explained to the participants. 
 
7.2.1.4 Yale-New Haven 
The Yale Research Assistant will work in collaboration with the site-PI (McCorkle) and site-CoI 
(Ercolano) to identify potential participants for the study. Potential participants must meet eligibility 
criteria outlined in the study protocol.  Potential areas of recruitment include the outpatient setting 
(ostomy or post-surgical clinics) and inpatient surgical units of the Yale New-Haven Hospital 
system and Smilow Cancer Center.  The appropriate medical and nursing staff involved in the 
care of these patients will be contacted about the study a priori and a method of communication 
and referral will be established between the clinical and research staff.  We will be in close touch 
with these referral sources on a daily basis to identify potential patients. 
The clinical staff will approach the patient and ask for his or her permission for the RA to contact 
them. Having this permission, the RA will approach the patient to describe and explain the study 
purpose, study groups (OSMT training group versus Usual Care Group), randomization 
procedures, study procedures, and human subjects’ protection concerns (right to withdraw, 
confidentiality, risks and benefits, etc.). 
 
7.2.2 Randomization 
Patients who meet eligibility criteria will be approached to enroll in the randomized telehealth 
intervention versus a usual care comparison group using an approved consent process (see 
Schema). Consents will need to be signed and received prior to randomization. 
 
Subjects will be randomized using stratified permuted block randomization. Once consented, 
the participant will be randomized to OSMT or UC, using computer-generated random lists 
blocked by site and gender, and with assigned arm in sealed envelopes blind to investigators 
and coordinators until assignment. This means that each participating site will have a unique 
pair of computer-generated randomization lists, one for male and the other for female, ensuring 
balance by sex between intervention and usual care groups at each site without the need for 
communication with a data coordinating center core for each randomization. The randomization 
lists will be comprised of blocks of 4 with permuted patterns so that balance is achieved after 
multiples of 4 in each sex have been randomized. 
 
7.2.3 Consent 
Participant Consent – Potential participants will be afforded sufficient time to consider whether or 
not to participate in this research study. If the ostomate agrees, informed consent will be obtained. 
If patients wish to have more time prior to signing the consent, they may mail back the consent. 
For potential participants contacted over the phone, the same information will be relayed, and 
they will be asked to mail the consent prior to randomization. Participants will complete the 
baseline assessment following informed consent. 
 
Caregiver Consent – Participants will designate their caregivers upon registration. It can be 
anyone they feel they want in that role for this study. As with participants, caregivers will need to 
have signed a consent prior to participation. Only some basic information will be obtained for 
caregivers, including age, gender, relationship, and current work status. This will be maintained 
in a study sheet for every patient. Appendix 11 
 
7.2.4 Study ID 
The study ID will be comprised of 4 digits, in which the first digit denotes the medical center site, 
and the remaining digits number the consented subjects within the site. For the first digit, 1 = 

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University of Pennsylvania, 2 = Yale, and 3 = City of Hope. Thus, for example, the first subject 
consented at City of Hope would have study ID 3001. 
 
7.2.5 Subject Reimbursement 
Intervention and Usual Care subjects will receive Greenphire ClinCards in the amount of $50 at 
completion of the initial survey, $50 at completion of surveys at the end of the intervention 
sessions, and $50 at completion of the follow-up surveys six months after the end of the 
sessions, for a total of $150. Intervention subject caregivers will receive Greenphire ClinCards in 
the amount of $25 for each of the two sessions they attend, for a total of up to $50. 
 
8.0 
MAILED PACKETS 
Mailed packets will include paper materials, described below. All packets will be mailed from 
and returned to the subjects’ respective medical center to ensure that PHI remains at the 
respective medical center. To mitigate the risk of mixing surveys from multiple participants, each 
page of paper surveys MUST have the Study ID pre-entered in its field.  No PHI will appear on 
the survey (other than a separate cover letter). After returned paper surveys are processed at 
the medical center, they will be shipped to the UA Data Core.  For RedCap® web-based survey 
administration (described below), the subject survey ID (separate from the subject ID and 
specific to each survey time) will be provided by the UA Data Core to the medical centers.  
Medical Center coordinators will provide their respective subjects survey ID and survey web link 
at the appropriate time, but the survey responses will transmit directly to the RedCap® server at 
the University of Arizona. 
 
8.1 
Session Information/Preparation 
Site coordinators at the three accrual sites will communicate to each other the number of 
subjects being assigned to a group as they are randomized to the Intervention arm. When the 
group enrollment gets to six, they will close enrollment to that group and begin enrolling in the 
next group. Coordinators will slow enrollment if needed so that subjects are not enrolled in a 
group starting more than 2 months from the enrollment date. If needed, the team will discuss 
adding additional groups to the schedule on different dates so that subjects will be able to start 
within the 2-month window from enrollment date. 
 
For intervention session schedules, the protocol will include two different schedules for 
intervention session administration. This design is to provide flexibility for participants and also 
to maximize study accrual and participation. The schedules include: 
 
Schedule #1: Two sessions administered on the same day, with a break in between. There will 
be a 4-week interval between the first set of 2 sessions and second set of 2 sessions. The 
caregiver session will be held two weeks after the first set of sessions. 
 
Schedule #2: One session administered per day, once a week over a five-week period. There 
will be a one-week interval between session 2 and session 3 during which the caregiver session 
will be held. 
 
The two schedules vary throughout the study period based on participants’ convenience and 
preference. 
 
If a subject misses a session, they can make up just the missed session with the next 1 or 2 
scheduled groups rather than start over with a new group. If they miss both Session 1 and 
Session 2, they can be re-assigned to the next group as long as the next group size doesn’t 

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exceed 6, or at the ostomy nurses’ (Nancy Tallman and Christie Simons) discretion if the group 
size would exceed 6.  
 
If a subject misses Session 3 or Session 4 or both, they can make up the missed session(s) 
with the next 1 or 2 scheduled groups. If they miss both chances to make up the sessions, they 
will be asked to do the surveys and will be analyzed as a separate group using an intent-to-treat 
contrast. 
 
To account for making up sessions or delays in completing interim surveys, for both intervention 
and usual care groups, the 6-month followup surveys will be requested from subjects 6 months 
after the date the interim surveys are completed.  
 
Caregivers who miss the Caregiver session in the subject’s assigned group will not be required 
to make up the session. 
 
At the start of Session 1, the ostomy nurses will review Appendix 9, Group Rules, and remind 
participants that they can contact their local site Peer Ostomates or ostomy nurses for help.  
 
In any session, if a participant becomes disruptive, it will be noted and if necessary, they will be 
asked to leave the session. The team will discuss the nature of the disruption and how to handle 
the participant for future sessions.  
  
8.1.1 Telehealth Connection Information (Appendix 8) 
8.1.2 Group Rules (Appendix 9) 
8.1.3 Goal Setting (Appendix 10) 
Participants will receive the four-page goal setting form (Appendix 10) as part of the patient 
packet mailed to them before the first session, and will be asked to list goals for helping improve 
their daily life prior to Session 1 (page 1 of the form). Their goals will be discussed during 
Session 1 and will be revisited and possibly revised in Session 2 (page 2 of the form) and again 
in Session 3 (page 3 of the form). Participants should be instructed to keep a copy of the first 
page of the form and return the completed first page with the baseline surveys. Participants 
should be instructed to return page 2 after Session 2, and return page 3 after Session 4 along 
with the interim surveys. The final page 4 should be returned with the followup surveys six 
months after the end of the sessions. Site Coordinators will key in goal setting data for data 
entry. 
 
8.2 
Surveys (Appendices 2 to 7) 
 
8.2.1 Baseline surveys to be completed are: 
1. COH-QOL-CRC (full survey; Appendix 2a AND Appendix 2b) 
2. HADS (Appendix 3) 
3. PAM (Appendix 4) 
4. Self-Efficacy (Appendix 5) 
5. Ostomy Knowledge (Appendix 6) 
6. Burden of Care (full survey; Appendix 7a [NOTE: Do not include Greatest 
Challenge portion of Appendix 7a]) 
7. Goal Setting (page 1 of 4; Appendix 10) 
8.2.2 End of Session surveys to be completed are: 
1. COH-QOL-CRC (43 scaled items only; Appendix 2b) 

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2. HADS (Appendix 3) 
3. PAM (Appendix 4) 
4. Self-Efficacy (Appendix 5) 
5. Ostomy Knowledge (Appendix 60 
6. Burden of Care (short form; Appendix 7b) 
7. Goal Setting (pages 2 and 3 of 4; Appendix 10) 
8.2.3 6-month Follow-up surveys to be completed are: 
1. COH-QOL-CRC (43 scaled items only; Appendix 2b) 
2. HADS (Appendix 3) 
3. PAM (Appendix 4) 
4. Self-Efficacy (Appendix 5) 
5. Ostomy Knowledge (Appendix 6) 
6. Burden of Care (full survey; Appendix 7a [NOTE: Include Greatest Challenge portion 
of Appendix 7a]) 
7. Goal Setting (page 4 of 4; Appendix 10 
 
 
8.2.4 RedCap® Surveys.  Surveys will be available to complete electronically via the web in 
RedCap, which will be preferred administration method unless subjects cannot manage the 
method or express a strong preference against it. The UA Data Core will provide each medical 
center with a list of survey ID’s linked to subject IDs. The survey ID’s allow the subject to log into 
the RedCap survey and can only be used once. Medical centers will provide each subject with 
the survey link and his or her survey ID at the appropriate time for each of the three survey 
periods. 
 
8.2.5 Survey Tracking.  Survey/Participant status will be tracked using an MS Access 
tracking database maintained at UA Data Core, with mirror databases at each medical center 
for their respective samples.  However, the medical center tracking database will account for all 
potentially eligible participants, whereas the UA Data Core tracking database will only contain 
consented subjects.  Since paper surveys are returned to respective sites, whereas RedCap 
surveys are transmitted to UA Data Core, the disposition of consented subjects in the master 
tracking database will be synchronized with the medical center tracking databases on a weekly 
basis.  
 
8.2.6 Survey Follow up. Telephone contact with respondents will be initiated under four 
circumstances: 1) for non-respondents (paper survey not returned or RedCap survey not 
submitted within 2 weeks of mailing or provision of RedCap survey ID); 2) when a returned 
survey has incomplete or illegible data; 3) when the respondent has questions or requests a 
call; and 4) if a HADS score is 11 or greater on the depression questions (Appendix 3), the 
coordinator will inform the participant that this might indicate depression and they should see 
their physician. This will be documented as a memo in their study file. This will be done within 
24 hours of receiving the survey. This will not preclude their participation.   
 
8.2.7 Returned Survey Processing.  Paper questionnaires returned will be logged in the 
medical center tracking system. This includes packets returned as “undeliverable, no forwarding 
address,” which would generate a phone call to subject to clarify mailing address. RedCap 
questionnaires submitted to UA RedCap server will be logged into the Data Core tracking 
system. Returned paper questionnaires will be stored securely in a locked office or filing 
cabinet. Each questionnaire will be reviewed for missing responses, improperly marked 

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responses, handwritten comments on the survey forms, and inserted letters and notes from 
respondents. 
 
8.2.8 Cleaning PHI.  Any comments that reveal PHI will be masked before photocopying 
paper questionnaires and destroyed in the case of RedCap surveys. 
 
8.2.9 Missing Items.  All surveys will be reviewed for completeness based on the criteria 
outlined below. If the respondent appears to have inadvertently skipped questions, the 
interviewer will contact the respondent by telephone and attempt to complete the missing items. 
Unusual situations should be brought to a study project meeting to discuss issues before 
contacting participant. Use the following guidelines to determine how to handle missing items: 
 
a. Make all decisions of intent based on marginal notes first (i.e., fill in the answers not 
bubble filled, but indicated by a written note) 
b. Appropriately skipped questions based on skip patterns will not be counted as missing. 
c. Call backs will be placed when the following criteria are met: 
i. 
Full page is missing 
ii. >20% questions missing (or more than 1 response to choose best answer 
questions), not counting open-ended questions, appropriately skipped questions, or 
sensitive area questions listed below 
iii. The following sensitive questions will not be counted in determining need for 
callback, nor asked during a call back if missing: 
1. COH-QOL-CRC intimacy item “Has your ostomy interfered with your ability to be 
intimate?” 
2. COH-QOL-CRC spiritual item “Is support you receive from personal spiritual 
activities such as prayer or meditation sufficient to meet your needs?” 
3. COH-QOL-CRC religious item “Is support you receive from religious activities 
such as going to church or synagogue sufficient to meet your needs?” 
4. COH-QOL-CRC Sexual activity items. 
5. COH-QOL-CRC race/ethnicity items 
6. COH-QOL-CRC household income item 
7. Open ended questions will not be counted towards a call back or asked in a 
callback. 
d. If the participant declines to answer a question again during the call back, initials will be 
placed by the question and the question will be left blank. 
 
8.2.10 Shipping paper surveys to Data Core.  Hard copy surveys will be reviewed for PHI, 
which will be masked if present, and scanned to a PDF file within a secure server at each site. 
These PDF files will be uploaded into RedCap, using a built-in application called Send-It, in 
which files stay behind the RedCap firewall until retrieved by intended RedCap user recipient 
from the same RedCap project. Files can only be downloaded by the designated recipient, and 
that recipient must have log-in capability to RedCap and assignment to the specific project. 
Within RedCap on the “My Projects” page (one level up from the PCORI project), there is a tab 
on the right called “Send-it” with an envelope icon. Instructions within the tab are clear to follow. 
Each PDF file should have only one subject and one event (baseline, interim, followup). Files 
should be named according to a consistent naming convention for each site based on subject ID 
number and event (e.g., 1001 baseline.pdf; 2003 followup.pdf, etc.). Data Core staff will 
download PDF files from Send-it to a secure University of Arizona server and key data 
responses into the RedCap database. PDF files will be deleted at end of the study. 
 

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8.3 
Curriculum (Appendix 1) 
This will also be sent electronically. 
 
9.0 
STUDY PLAN 
 
9.1 
Usual Care 
The UC control program is designed to compare OSMT to usual care to capture the Hawthorne 
effect. The final intervention for the UC group includes: 
1) Recommending the patient has met at least once with an ostomy nurse (while likely to have 
happened in the peri-operative period, it may not be universal); 
2) Providing the booklet published by The Wound, Ostomy, and Continence Nurses’ Society 
entitled “Basic Ostomy Skin Care: A Guide for Patients and Health Care Providers,” with 
instructions on how to use it;  
3) Local support group contact information;  
4) Encouraging patients to have seen their surgeons at least once in follow-up after surgery;  
5) Contact information for local nutritional and physical therapists; and  
6) Ostomy nurse contact information. If patients have specific questions about materials, the 
research coordinator will clarify the content and encourage the patient to call their physician 
or ostomy nurse about a continuing problem. These resources will also be given to those in 
the OSMT program. 
 
9.2 
Intervention 
9.2.1 Peer Ostomate Screening, and Training. We will employ gender-specific Peer 
Ostomates at each site. We hope to have them assist with most group sessions, as well as 
serve as assigned “buddies” for each group of the intervention participants (there will be up to 6 
participants for whom each Peer Ostomate is a “buddy” at one time.) Buddies will be available 
for questions and support during and outside of the training sessions, including exchange of 
phone numbers if requested. Peer Ostomates have been screened and carefully interviewed to 
ensure they are well-acclimated to their ostomies and comfortable discussing sensitive issues 
with participants. Peers will be invited based on relationships with local ostomy nurses or 
clinicians who feel they would be appropriate for this role. Peer Ostomates who are currently 
under psychiatric care for serious mental illness or with known psychiatric diagnoses are 
excluded. At the interview, responsibilities will be clearly described. 
Peer Ostomates will only be assigned to those of the same gender. This is to promote 
discussion of sensitive issues where it might be uncomfortable to talk with someone of the 
opposite sex. Peer Ostomates will be trained as both co-facilitators and buddies. This will 
include specific limitations as well as mandates of when to call the research coordinator or site-
PI. Examples may be if participants describe medical symptoms (e.g., fevers, abdominal pain, 
vomiting, bleeding) or psychological problems (e.g., suicidal ideation, extreme depression) that 
need more urgent medical attention. Peer Ostomates will maintain a log to keep track of how 
many times they were called by ostomates and the reason for the call. Peers will be trained in 
the curriculum which will differentiate them from study participants. 
9.2.2 Ostomy Care Nurse-Facilitators. We have an experienced OCN-facilitator who will lead 
sessions from the Tucson site (Nancy Tallman). She participated in the pilot study and is well-
versed in the curriculum. Her back-up in Tucson (Christie Simons) has also been instructed on 
the curriculum, Ostomy Care Nurse facilitators will train participants to become problem solvers, 
rather than simply giving them a health professional’s solution. They will also participate in 
weekly research team meetings to give updates on issues and events as they transpire. In this 
way they will give feedback into what components of the program are problematic, as well as 
what aspects are working well (program evaluation). There will also be OCNs available at the 

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University of Pennsylvania (UP), City of Hope (COH) and Yale New Haven (YNH) sites as an 
added resource for participants.  
9.2.3 Specific Ostomy Resource Compendium. We have compiled a Tucson-specific 
resource compendium to distribute to participants. This includes web-based, OCN resource 
lists, and personal knowledge to identify local ostomy resources, updated for UP, COH and 
YNH sites. (Appendix 12) 
9.2.4 Program Curriculum. OSMT sessions are described in Table 5 below. The OSMT is 
organized around several concepts that provide the basis for the content and methods. The 
CCM points to the need for supporting self-efficacy enhancing, evidence based information and 
peer support. The CG literature points to the need for CGs to be able to step in and provide 
assistance when participants are unable to do for themselves, but not to take over totally and 
create dependency in their family member. The teaching content is divided into five 1.5 - 2 hour 
sessions: three solely for the participants, one for their CG, and one as a conjoined or single 
visit. Prior to Session 1, participants will list personal goals for participation in OSMT. 
Participants will be given an assignment at the completion of Session 2, which will be to monitor 
ostomy output (frequency and consistency of bowel movements and flatus), and problems 
related to pouching system. As urinary diversion patients also have interruption of their intestine 
to make their ostomy, with concomitant obstruction/stomal hernia risks, ostomy output issues 
may also be applicable to them. This exercise will assist the ostomate in becoming familiar with 
the relationships between input of food and drink, and ostomy output. 
9.2.5 Preparation for sessions. 
1. Participants will receive reminder calls one day prior to the training sessions, as well as a 
detailed schedule upon consenting to participate. 
2. Participants will review and test the system within one week prior of the first session to 
ensure they understand how to get on the calls. For technical assistance connecting to Zoom, 
participants can contact the Arizona Telehealth Program (ATP) Help Desk at 520-626-6978 or 
atpvcsupport@telemedicine.arizona.edu.   
 
3. Participants who request it will review and test the system within one week prior of the third 
session to ensure they understand how to get on the calls. 
4. Caregivers will receive reminder calls one day prior to their training session. At this time, the 
coordinator will ask the caregiver’s age, gender, relationship to ostomate, and work status.  
5. Caregivers will review and test the system within one week prior of their session to ensure they 
understand how to get on the calls.  
 
Training Session Descriptions 
1 
Content covers self-management, immediate concerns of ostomates (e.g., definitions, 
associated disease states), daily care, nutritional needs, impact on feelings, skin care 
and clothing changes. Teaching methods are interactive with hands on practice with 
equipment, pouches, and belts. Discussion includes potential ostomy complications. 
Assignment: Monitor ostomy output (frequency and consistency) and problems with 
pouching system.  
2 
Discuss completed assignment of personal goals for OSMT. Addresses social well-
being, problems of social/interpersonal relationships, public appearances, being 
prepared for emergencies, intimacy and sexuality, and communication skills within the 

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Training Session Descriptions 
cultural framework of the individual participant and their family with home and social 
environments included in discussions. Fatigue is discussed as a model of long term 
effects of cancer and other chronic diseases.  
CG 
A CG will attend a separate session two weeks (one week for alternate schedule) after 
Session 2, akin to Session 2, covering the same topics specifically tailored to support 
adjustment of CGs as well as additional content as needed from the other sessions in 
order to ensure CG also has achieved a comfort level with ostomy care. We recognize 
that some participants will not have a CG to participate in this session. Focus for the 
CG will also be within their cultural framework and home environment. Includes 
HRQOL assessment of CG and evaluation of their participation.  
3 
Discuss completed assignment. Content promotes a healthy lifestyle via nutritional 
management, physical activity recommendation and overcoming barriers, psychological 
health, and improving attitudes. Participants are encouraged to set new priorities, 
evaluate friends, and work on changing negative attitudes. Tips for traveling are 
included. Discussion includes potential ostomy complications. Assignment: Review 
personal goals in regards to ostomy care.  
4 
Booster Intervention content driven by group demands and needs. The CG will also be 
invited to this session to help ensure a well-rounded understanding of issues, comfort 
with ostomy care, and anticipated future dilemmas. Discuss attainment of personal 
goals for participation in OSMT.  
 
9.3 Telehealth Protocol 
9.3.1. Telehealth participation requirements:  
a. Applicants to the OSMT study will be placed initially into candidate status.  OSMT 
candidates, or their caregiver, must consult via phone with Arizona Telemedicine 
Program (ATP) technical staff to review the technical requirements for participation in 
OSMT sessions via telehealth.  Candidates that do not have access to the required 
technology or internet connectivity, will be offered a temporary loan of compatible 
technology, based on a first come first served basis, from a pool of tablets and 
mobile hotspots acquired with OSMT study funding that are designated for loan to 
study participants.  Candidates that do not have access to compatible technology 
and/or internet connectivity, and that can’t be offered an equipment loan due to lack 
of availability of the required technology from the OSMT device pool, may be offered, 
at the discretion of the OSMT study leadership, the option to be added to a waiting 
list for OSMT provided technology to enable them to participate in a later OSMT 
training group once devices become available again in the OSMT device pool. 
i. 
OSMT study candidates need the following equipment and capabilities: 
1. Access to a computer, laptop, tablet or smartphone equipped with web 
cam, microphone and speaker that meets or exceeds the requirements 
specified by Zoom, Inc. for the Zoom video conferencing service   
 
Zoom requirements for computers and laptops are located 
here: https://support.zoom.us/hc/en-us/articles/201362023-
System-Requirements-for-PC-and-Mac  
 
Zoom requirements for iOS and Android tablets and 
smartphones are located here: 
https://support.zoom.us/hc/en-us/articles/201179966 
a. If the candidate does not have access to a computer, laptop, 
tablet or smartphone equipped with a webcam, microphone, 
and speaker that meets the requirements to use the Zoom 

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video conferencing service (see links to requirements above), 
the candidate will be offered the option of borrowing a 
compatible tablet, if any are available from the pool of OSMT 
tablets slated for loan to study participants, configured with 
WiFi and Verizon cellular data internet access capability.  
Candidates that opt to borrow a tablet from the OSMT program 
will need to sign an equipment loan agreement.  See 
agreement in Appendix 13. The tablet along with any required 
accessories, and a pre-paid return shipping label, will be 
shipped to the candidate at the address that they specify on 
the loan agreement. 
2. Internet access at the location that candidate will connect to OSMT 
sessions from that is capable of sustained 1.5 megabits per second 
download and 1.5 megabits per second upload speeds, and a data plan 
that has sufficient capacity for data usage associated with OSMT video 
conferencing sessions. The estimated monthly data usage to fully 
participate in the OSMT sessions is 5.2 gigabytes. (Data usage per hour 
of connection to OSMT video conferencing sessions is estimated to be 
1.3 gigabytes per hour.  Data usage will vary for each video conference 
participant and may be more or less than the 1.3 gigabyte per hour 
estimate.  OSMT sessions are estimated at 4 hours per month.) 
i. 
If the candidate has access to a computer, laptop, tablet or 
smartphone that is WiFi capable, but does not have internet 
access that meets the requirements for participation in the study, 
the candidate will be offered the option of borrowing a Verizon 4G 
mobile hotspot that provides internet connectivity via Verizon’s 
cellular data network, if any are available from the pool of OSMT 
mobile hotspots slated for loan to study participants. Ostomates 
that opt to borrow a mobile hotspot from the OSMT program will 
need to sign an equipment loan agreement.  See agreement in 
Appendix 13  The mobile hotspot along with any required 
accessories, and a pre-paid return shipping label, will be shipped 
to the candidate at the address that they specify on the loan 
agreement. 
3. Access to a private and relatively quiet environment such as a room in the 
candidate’s place of residence to connect to the OSMT sessions from. 
This is important to afford privacy to the OSMT group.   
b. OSMT candidates must validate their ability to successfully communicate via the 
Zoom video conferencing service by successfully completing a test video call with 
Arizona Telemedicine Program (ATP) helpdesk staff via Zoom. 
1. Zoom test call with ATP will validate that OSMT study candidates: 
i. 
Have access to and can operate compatible technology 
ii. 
Have the Zoom video conferencing client application installed 
iii. 
Are able to successfully join a Zoom online meeting by launching 
the Zoom application, entering a meeting number and their first 
name and the name of the state they are calling from (example 
Mike – Arizona), and then clicking “Join” to connect. 

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iv. 
Can, via Zoom live video conferencing, both see and hear the 
ATP staff member that is testing with them, and can be seen and 
heard by the ATP staff member.  
v. 
Know how to reconnect to a Zoom video conference if they are 
disconnected unexpectedly for any reason during a live OSMT 
session. 
vi. 
Can access Zoom application controls and mute and unmute their 
microphone, and can disable and enable their live video camera 
image. 
vii. 
Know how to leave a Zoom meeting and exit the Zoom 
application.   
viii. 
Know how to view the active speaker and how to view other video 
conference attendees via the gallery view(s). 
ix. 
Has been advised of the importance of keeping their microphone 
muted when they are not speaking.   
x. 
Know how to monitor the image that their camera is capturing and 
have been advised on the basics of optimizing their image on 
camera. 
xi. 
Have the ATP technical support phone number in case of future 
need of technical support.   
xii. 
Have been advised to connect their PC/MAC/Tablet/Smartphone 
to an external power source for the duration of the OSMT Zoom 
video conferencing sessions as video conferencing is an intensive 
use of the PC/MAC/Tablet/Smartphone that will quickly drain its 
battery, if it is a battery powered device. 
xiii. 
Confirms that they have received printed version of the OSMT 
technology documentation for reference. 
2. OSMT candidates that successfully complete the validation steps listed 
above will be transitioned to study participant status.  Study participants 
will be contacted by their respective study accrual center for scheduling 
into an OSMT group. 
9.3.2. Upon return of loaned devices from study participants, and before loaning to a different 
OSMT candidate or participant, tablets and/or mobile hotspots will be wiped down with a 
manufacturer approved cleaning process, and will have their content and settings erased 
and reconfigured with settings needed for use with the OSMT study.  
9.3.3. As part of the informed consent 
a. OSMT study participants are advised that OSMT sessions will not be recorded and 
that if they miss any part of an OSMT session for any reason, such as, but not limited 
to, technology or communications failure, that they should contact their OCN to 
address any concerns that they may have about their ostomy care. 
b. OSMT study participants agree that they will not, by any means or technology, 
photograph, video record, or audio record any portion of the OSMT Zoom video 
conferencing sessions.  This is to protect the privacy of everyone in the OSMT 
group. 
c. OSMT study participant consents to allowing other study personnel and participants 
to see and hear them as well as allowing the OSMT session group they participate in 

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to potentially see anything in their camera’s field of view and hear any sounds within 
their microphone’s range. 
9.3.4. For each scheduled OSMT session, OSMT session group members will join their 
assigned Zoom video conference by launching the Zoom application on their ATP 
validated PC/MAC/Tablet/Smartphone device and clicking Join Meeting.  They will then 
enter the meeting ID number and their first name and click “Join”.  In case of technical 
difficulties, they will call ATP technical support for assistance connecting to the OSMT 
Zoom video conference session. 
9.3.5. All OSMT video conferencing sessions will use a HIPAA compliant Zoom account 
acquired and managed by the University of Arizona, Arizona Telemedicine Program. 
OSMT study participants will receive instructions in the mail detailing how to connect to 
the OSMT education session calls.  
9.3.6. ATP will receive study participant contact information and participant’s status in the 
study, for purposes of providing technical support and shipping and receiving loaner 
equipment, if required, via verbal communications over telephone directly from study 
participant’s, their caregivers, or study accrual site personnel.  ATP will not receive or 
store study participant information electronically, except temporarily if participant 
information is left as a voicemail message.  ATP will record study participant information 
in handwriting on paper.  ATP will shred paper records of study participant information 
once both of the following conditions are met: 1. ATP has been informed by a study 
accrual site that a participant has completed their OSMT sessions or has withdrawn from 
participation in the study; and 2. Equipment loaned by the study to the participant, if any, 
has been returned to ATP per the participant loan agreement terms. 
 
9.4 Sessions 
Site coordinators will provide the ostomy nurse educator with the name of subjects who will be 
attending the sessions (use first names only). Attendance lists will be reviewed at the weekly 
research meetings. Introductions and attendance will be taken at each session and recorded by 
the group leaders in Tucson.  They will also ask what type of device people are using. At the end 
of the session they will ask to rate 1-4 their ability to connect and how well the technology worked. 
Any individual issues reported by participants with respect to their ostomy care (e.g., equipment 
problems, difficulty obtaining supplies, etc.) either during the sessions or in communications with 
the site coordinators, will be referred to the local site ostomy nurse(s). 
 
If all participants in a session are of the same gender, they will be asked if they are comfortable 
with the Peer Ostomate of the other gender staying on the session.  
 
9.5 Survey Plan 
We will survey HRQOL to measure short term (at the end of Session 4) and long term (6 
months) sustainability for all participants. 
 
Baseline – see 8.1 
 
End of Sessions – Surveys will be mailed if requested one day following the last session or 
instructed on RedCap 
 
6 month follow-up – Surveys will be mailed if requested one day following the last session or 
instructed on RedCap 
 

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9.6 Data Management 
 
A 10% data quality check will be performed every 3 months, after which all data entered to the 
working database will be archived in the master database. 
 
10.0 
STUDY CALENDAR 
 
 
SESSIONS (X) AND FOLLOWUP (F) 
 
2016 
2017 
2018 
2019 
Gr
p 
N 
D 
J 
F 
M 
A 
M 
J 
J 
A 
S 
O 
N 
D 
J 
F 
M 
A 
M 
J 
J 
A 
S 
O 
N 
D 
J 
F 
M 
A 
M 
1 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
2 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
3 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
4 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
5 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
6 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
7 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
8 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
9 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
10 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
 
11 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
 
12 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
 
13 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
 
14 
 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
 
15 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
 
16 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
 
17 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
 
18 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
 
19 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
 
20 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
 
21 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
22 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
23 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
X 
X 
 
 
 
 
 
 
F 
 
 
11.0 
CRITERIA FOR EVALUATION AND ENDPOINT DEFINITIONS 
 
 
Study instruments and endpoints 
Endpoints 
Patient Activation Measure (PAM). The 
PAM uses a uni-dimensional, probabilistic 
Guttman-like scale that reflects a 
developmental model of activation that 
involves four stages: (1) believing the patient 
role is important, (2) having the confidence 
and knowledge necessary to take action, (3) 
actually taking action to maintain and improve 
one’s health, and (4) staying the course even 
under stress. High internal consistency (alpha 
.87) and construct validity have been reported. 
PAM (continuous 0 to 100, where 100 is 
most activated) 
 
Level 1: May not yet believe that the 
patient role is important (PAM ≤ 47.0) 
Level 2: Lacks confidence and knowledge 
to take action (PAM 47.1 to 55.1) 
Level 3: Beginning to take action (PAM 
55.2 to 67.0) 
Level 4: Has difficulty maintaining 
behaviors over time (PAM ≥ 67.1) 
Self-Efficacy to Perform Ostomy Self-
Management Behaviors. Modified from Lorig 
SE Ostomy Self-Management (1 to 10, 
where 10 is most confident) 

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Study instruments and endpoints 
Endpoints 
and colleagues’ Self-Efficacy to Perform Self-
management Behaviors Scale, an outcome 
measure for Chronic Disease Management 
Interventions, this scale represents 8 domains 
with reported Cronbach’s alpha for original 
scales: physical activity (.83), information 
seeking (NA), support (.77), communication 
with HC providers (.90), ostomy management 
(.87), social and recreational (.82), symptom 
management (.91), and depression (.92). 
COH-QOL-CRC Scale. T0he City of Hope 
QOL-Ostomy questionnaire (developed by 
Consultant M. Grant) was designed for all 
adult ostomates, and has a 4-dimensional 
HRQOL (physical, psychological, social and 
spiritual well-being) framework gathering 
demographic, clinical history, personal (e.g., 
diet, work, and activity) and clinical data. 
Reported Cronbach’s alphas are .94 total 
scale and .80-.90 subscales. Family version 
will be used for caregivers. 
COH-QOL-CRC Total 
COH-QOL-CRC Physical 
COH-QOL-CRC Psychological 
COH-QOL-CRC Social 
COH-QOL-CRC Spiritua1 
 
 
(0 to 10 scores) 
 
Ostomy Knowledge Questionnaire. This 
brief survey, derived at City of Hope, was 
modified for the pilot study and further 
adapted by the study team to ensure major 
topics were included.  
Knowledge score (0 to 11) 
Hospital Anxiety and Depression Scale 
(HADS) The HADS is a self-assessment 
instrument for detecting anxiety and 
depression in medical outpatients. Reported 
Cronbach’s alpha .84-.89. 
Separate scores for Depression and 
Anxiety, 0-7 = Normal; 8-10 = Borderline 
abnormal; 11-21 = Abnormal 
Burden of Ostomy Care Based on the model 
developed by Given, et al., for long-term care, 
this survey will gather participant self-reports 
of ostomy-related medical care use, 
productivity losses, and associated out-of-
pocket expenses and time spent for ostomy 
care in general, and the OSMT intervention, 
caregivers, and paid housekeeping. 
ostomy-specific family resources 
ostomy-specific health care services 
ostomy-related family financial burden 
types and levels of effort of OSMT 
intervention personnel 
specific equipment, supplies, and 
informatics support required 
 
12.0 
STATISTICAL CONSIDERATIONS 
12.1 
General. Aim 1 will be analyzed with linear mixed models for repeated measures. Aim 2 
will utilize a variety of sources and methods to enumerate the intervention program and ostomy-
related family resources in each study arm. 
If a subject misses Session 3 or Session 4 or both, they can make up the missed session(s) 
with the next 1 or 2 scheduled groups. If they miss both chances to make up the sessions, they 

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will be asked to do the surveys and will be analyzed as a separate group using an intent-to-treat 
contrast. 
 
12.2 
Aim 1: Using our enhanced telehealth techniques, determine if patient activation, self-
efficacy, ostomy-related knowledge, and HRQOL will be improved and sustained over time in 
the online interactive communication Ostomy Self-Management Telehealth program (OSMT) 
curriculum compared to a UC group. 
Under an intent-to-treat approach, change in outcomes will be evaluated longitudinally with 
linear mixed models, testing the effect of study arm adjusted for potential confounders. Such 
models evaluate both associations and rates of change, accounting for within-subject 
correlation. The Primary Outcome will be PAM. Secondary Outcomes include SE, COH-QOL-
CRC scales, and Ostomy Knowledge.  Post hoc contrasts will evaluate effect of training 
(baseline to post) and whether effect is sustained after training (6 month post to follow-up). 
Standard multivariable modeling procedures will be used to select or eliminate potential 
confounding variables, starting with candidate variables that are biologically plausible or found 
to be associated with endpoint change scores (baseline vs. follow-up) in bivariate analyses with 
a p-value of less than 0.20. Potential candidate covariates and confounders include (but are not 
limited to) CG participation in training sessions, depression (HADS), time since surgery, ostomy 
type, age, sex, stage, anticipated permanence of ostomy, and pre- or post-surgical radiation or 
chemotherapy. We will explore potential interaction for plausible effect modifiers, such as 
gender, or having a CG.   
The COH QOL-CRC assesses ostomy burden and care abilities, including time taken to perform 
daily ostomy care, comfort with ostomy care, comfort with diet, adjustment of diet for ostomy, 
appetite, clothing and other problems with ostomy placement. We will also measure clinically 
related outcomes, including medical attention for problems with bowel, bladder, or ostomy. 
Changes in these responses will be compared between treatment groups with linear mixed 
models, chi-square tests or t-tests, as appropriate. 
Descriptive statistics will be presented on attendance at training sessions. We will describe and 
contrast quantity and type of ostomy-care help (professional and lay) sought outside of the 
training sessions, including calls for support from study Peer Ostomates. Self-reported Peer 
Ostomate call frequency and duration will be corroborated with a call log maintained by the Peer 
Ostomate. We will evaluate hypothesized association between OSMT attendance level and 
outcomes using linear mixed models that have a weighted attendance score as an independent 
variable. Alternative attendance scores will be tested that give weight to ostomy-care help 
outside of training sessions. 
12.3 
Aim 2: Determine the differences in ostomy-related medical care utilization and family 
financial burden imposed on survivors between OSMT and UC groups. 
Hypothesis 2.1: OSMT telehealth subjects will use fewer ostomy-specific family resources 
in the 6 months after OSMT compared to UC subjects. 
Hypothesis 2.2: OSMT telehealth subjects will use fewer ostomy-specific health care 
services in the 6 months after OSMT compared to UC subjects. 
Question 2.1:  What is the difference in the overall levels of ostomy-related family financial 
burden between OSMT and UC groups? 
Question 2.2:  What are types and levels of effort of OSMT intervention personnel and 
specific equipment, supplies, and informatics support required to implement and operate a 
successful OSMT program; what are participants’ levels of use of ostomy-specific health care 

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services and supplies; and what are the time and in-home requirements for participating in 
OSMT for survivors and their family caregivers. This information is required for replicating our 
OSMT intervention in the event that we find it improves the primary and secondary outcomes 
of OSMT participants. 
The focus of Aim 2 is to compare medical care utilization, patient burden, and impact on patient 
time and activities for individuals participating in OSMT with those receiving UC. Assessment of 
these measures is critical for patient-centered care, in order to minimize the financial burdens 
and non-financial impacts (e.g., time commitment) of new interventions. To address hypotheses 
2.1 and 2.2, we will collect detailed information on use of medical care services and supplies 
related to ostomy care, patient burden for these services and supplies, required patient and 
caregiver time for ostomy care, interference with employment and volunteer activities, and 
perceived financial burden. Details regarding the four types of information to be collected for 
Aim 2 are presented below. We also provide information on assessment on study activities to 
address replication of the OSMT intervention (Question 2.2). 
12.4 
Ostomy-Related Medical Care Supplies and Services. We will collect information 
from study participants on their use of supplies and services related to ostomy care and their 
out-of-pocket expenses for these supplies/services. Ostomy-related services/supplies will be 
categorized in two separate groups: 
 Medical care encounters and ostomy supplies including: OCN visits; other ostomy-related 
medical care encounters (including physician and ED visits); surgical revision of stoma; 
ostomy appliances, wafers, bags; bowel medications; and skin medications.  
 Other equipment, household modifications related to ostomy and ostomy care, including: 
waterproof covers on for mattresses and furniture; bathroom remodels to accommodate 
ostomy care; special clothing to cover ostomy bag; alteration of clothing to cover ostomy 
bag, and transportation to and parking for ostomy-related medical care.    
12.5 
Ostomy-Related Time Requirements. We will also collect ostomy-related time 
requirements, that is, patient time required to obtain ostomy care, perform ostomy bag and 
wafer management, and clean ostomy bag spills. We will also ask study participants about use 
of both formal and informal CGs, time for caregiving activities related to ostomy care, and types 
of assistance (e.g., with housekeeping and shopping) required due to ostomy and ostomy care. 
12.6 
Employment/Volunteering Effects. All participants will be asked about their current 
employment status and volunteer activities (including usual hours per week devoted to work and 
volunteering). All subjects will be asked if their ostomy-related management and health 
problems led to work-loss days, sick leave days, leave without pay, changes in amount of hours 
worked and/or volunteered, loss of employment or volunteer opportunity, job-related corrective 
actions, and impaired job search and/or volunteer activities. 
12.7 
Perceived financial burden. The financial impact of ostomy and ostomy care will likely 
reflect patient burden for ostomy services and supplies as well as patient and caregiver time 
and interference with employment. Patients will be requested to provide information on 
perceived financial burden associated with ostomy-related care and on deferral of doctor visits 
and medication pick-up/refills because of financial pressures. 
Information for Aim 2 will be collected using a self-administered patient questionnaire. 
(Appendix D) 
12.8 
OSMT Intervention Replication Model.  Disseminating/replicating our OSMT 
intervention program requires: 1) an intervention operations manual; 2) official versions of all 

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intervention materials for interventionists and participants; and, 3) a fully-annotated 
staffing/budget model. One cannot expect to realize the same outcomes observed from our 
research implementation of OSMT if subsequent replications are under-budgeted and/or 
“trimmed” relative to our research and demonstration implementation. Another replication 
challenge is that the original research proposal may not be an appropriate replication guide 
because proposal budgets are typically cut by the funding agencies, and research teams revise 
their interventions in accordance with their lower budgets and implementation obstacles 
encountered. Consequently, research implementations often differ substantially from the 
intervention program initially proposed and peer-reviewed. The observed outcomes of an 
intervention reported in the major outcomes publications were achieved by the program 
elements that were actually delivered, not by the protocol and resources described in the funded 
research proposal. We will implement a project resource tracking system and start it as quickly 
as possible after notice of grant award (so we can document intervention fixed resources and 
start-up activities and resources, such as interventionist training) and planning efforts prior to 
the intervention launch. This will allow us to provide actual rather than projected costs 
associated with the OSMT intervention. 
Our OSMT program replication model will include the incremental physical resources required to 
implement the OSMT program, excluding research-specific inputs. We will follow the 
methodology outlined in Ritzwoller and colleagues42 to collect intervention-related inputs in real 
time (vs. retrospectively). Interventionist and research staff will complete templates weekly to 
capture the following data: 1) time spent hiring and training interventionists and Peer Ostomate 
mentors; 2) time incurred preparing training syllabi, Webinar presentations and handouts, 
participant homework exercises, Webinar attendance records, e-mail and telephone call logs, 
participant chart folders, etc.; 3) marketing and advertising activities for participant recruitment; 
4) Webinar preparation and set-up time, direct Webinar contact time, post-Webinar wrap-up and 
charting; 5) Peer Ostomate mentoring time; 6) e-mail and telephone contact time between 
participants and interventionists/peer mentors during and between intervention sessions 
(number of contacts, duration of each contact, and time required to chart each contact); 7) 
intervention IT and web conferencing equipment; 8) staff time spent helping participants obtain 
web appliances and internet service providers, if needed; 9) study-provided web appliances; 
and, 10) for participants/mentors who are informal caregivers, substitute caregivers to enable 
participation in OSMT webinars, if necessary. We will collect data on patient-related inputs via 
survey. 
In assessing the resources used by the OSMT intervention, we will pull out research inputs (i.e., 
resources used only because this is a comparative study rather than a “real-world” clinical 
program).42,43 These include project research meetings, surveys to collect research measures 
(excluding intervention fidelity measures), IRB/HIPAA compliance, and consenting participants. 
For those items that can be attributed to research and the intervention (OSMT management by 
PI, project manager time, joint research/intervention project meetings, etc.), we will estimate on 
a monthly basis the percentage of project intervention labor effort attributable to research and 
subtract from total project effort. 
12.9 
Webinar Intervention Staffing. The financial accounting systems of our participating 
research institutions track proportion of staff time charged to this research project. We will 
obtain numbers of hours employed for all research staff whose salaries are paid by the project 
budget. These generic classes of labor resources are producing both research and clinical 
intervention outputs. We will require all staff to maintain time logs of their project-related 
activities, with an emphasis on identifying research-specific tasks, intervention-specific tasks, 
and joint research/intervention tasks. For example, data analysts working on research data and 

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statistical analysis tasks represent a research input. Programmers working on an intervention 
tracking/scheduling system represent an intervention resource. The most intensive class of 
labor—investigators—have responsibility for both intervention implementation and fidelity, as 
well as for designing data collection instruments and performing statistical analyses. Hence, we 
will require each investigator to apportion their project-specific effort across classes of research 
and implementation tasks. We will review and revise the time-task data collection instruments 
so that all staff understands the definitions of the respective tasks and have places to report all 
their relevant direct effort activities.  
12.10 Non-Labor. We will also track all classes of non-labor intervention inputs, including 
study-furnished web appliances, intervention office supplies, reference materials for 
interventionists, auto mileage, office space rental, communications (telephone/internet/Web), 
mailings (for sending intervention materials to interventionists and participants), etc. For 
purposes of clinical replication, specificity in tracking quantities of specific inputs is an 
essential need. Note: We are not proposing to collect or analyze incurred expenses for this 
study as these will vary substantially over time and place. 
12.11 Avoidance of Bias. Randomized trials tend not to be vulnerable to confounding, 
observation, and information bias. We will further control confounding in multiple regression 
analysis. Selection bias will be avoided by blinding the assessment team to randomized arm 
prior to assignment. We will also collect demographic and clinical data, as permitted, on non-
participating eligible patients for comparison. We do not expect substantial loss to follow up, 
given the duration of follow up, our reminder systems, and ability for make-up webinars. If we 
find there is participation bias by limited times, we will vary times offered for the sessions.  
12.12 Qualitative Data. We have an open-ended question at the end of the questionnaire in 
Appendix D – Survivor/Family Use of Ostomy Care: “… Please share with us the greatest 
challenge you have encountered in having an ostomy.”  As indicated in the proposal, qualitative 
content will be placed into an Excel file. Using a qualitative, grounded theory approach44 and 
content analysis45, all survey responses will be reviewed by at least two of the investigators 
working independently to create a list of unique topics from the data. Codes for these topics will 
be assigned and grouped into relational categories. The resulting code book with categories and 
topics will be reviewed separately by two coders in an attempt to resolve any discrepancies in 
coding. The codebook will then be shared among the entire Research Team, discussed, and 
any data discordantly coded will be discussed for refinement and consensus. The resulting 
content will be used to provide data for manuscripts in the same way it was used in the 
Research Team’s past publications with similar text data.46-50 
12.13 Sample Size and Power. Total potential sample size 240 (up to 120 per arm), to ensure 
at least 75 per arm completing the study with complete baseline COH-QOL-CRC scaled items, 
assuming a 15% dropout rate. This will maintain sufficient power for the COH-QOL-CRC scaled 
items. The larger sample size for the primary endpoints Patient Activation Measure (PAM) and 
ostomy management self-efficacy (SE) will provide 80% power to detect a 2.75 change in PAM 
and a 0.50 change in SE, which is not considered excessively powered. Detectable differences 
based on variances observed from our R21 for PAM and SE, as well as from our R01 for COH-
QOL-CRC subscales. We changed two items slightly on the self-efficacy questions to make 
them ostomy-relevant. Our observed variation for ostomy management SE is consistent with the 
original form of symptom management SE across different patient samples reported by Lorig’s 
group (SD range 2.1 to 2.4).51-57 We will examine the reliability of these items and expect them 
to have a Cronbach’s alpha of > 0.75. Calculated detectable differences were based on the 
following assumptions 1) alpha of 0.05, 2) within-subject correlation on repeated measures of 
0.60. Estimates are based on repeated measures multivariable modeling, adjusted for baseline, 

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with two follow-up measurements. Also shown for comparison are two rough indices of clinically 
important differences. Sufficient research has not been performed on these scales to determine 
with certainty a minimal clinically-important difference that is anchored on participant self-
assessment of health status. An alternative suggested by Sloan58 is the empirical rule effect size 
(ERES) method to judge minimally important differences (MID) in outcome measures. We also 
present 50% of the observed sample SD, a common rule-of-thumb for clinically meaningful 
differences.59 The table shows that even with substantial shortfall in sample size (down to 65 
per group) we still can detect differences below the estimated MID. 
Detectable Outcome Differences with 80% Power 
Measure 
SD 
N= 75 
N=70 
N=65 
ERES58 
.5 SD59 
Patient Activation Measure 
13 
3.4 
3.5 
3.6 
8.0 
6.5 
Ostomy self-management self-
efficacy 
2.3 
0.60 
0.62 
0.64 
0.80 
1.2 
COH-QOL-CRC Total 
1.6 
0.42 
0.43 
0.45 
0.88 
0.8 
COH-QOL-CRC Physical 
1.8 
0.47 
0.49 
0.51 
0.88 
0.9 
COH-QOL-CRC Psychological 
1.8 
0.47 
0.49 
0.51 
0.88 
0.9 
COH-QOL-CRC Social 
2.1 
0.55 
0.57 
0.59 
0.88 
1.1 
COH-QOL-CRC Spiritual 
2.2 
0.57 
0.59 
0.62 
0.88 
1.1 
 
 
13.0 
STAKEHOLDER OVERSIGHT 
 
13.1 
STAKEHOLDER ROLES 
13.1.1 Ostomy Nurses:  Ostomy Nurses (WOCNs) will have dual roles in this study: 1) Session 
leaders, and 2) Research Team participants. Ostomy nurses have actively participated in analysis 
of the results of the pilot study (Ref 6), as well as the design of the current proposal. In particular, 
WOCNs have assisted with:  1) identification of cancer survivor and caregiver needs related to 
ostomy care; 2) addressing nursing deficiencies for ostomates; 3) the curriculum design and plan 
of delivery; and 4) features of the comparator arm. They will co-lead the sessions and ensure 
participant and research goals are met. They will participate in weekly calls to report on sessions, 
help troubleshoot as needed, and ultimately prepare and present findings. The non-Tucson 
Ostomy Nurses will also be asked to participate in sessions and calls. They may impart 
suggestions as needed during the calls, and may be asked to lead in future calls. For Usual Care 
participants, if they have never interacted with an Ostomy Nurse, they will be offered at minimum 
a telephone consultation.   
 
13.1.2 Peer (buddy) Ostomates:  Peer Ostomates are patients who live with ostomies and are 
well-versed with the curriculum and study objectives. They will have dual roles in the study:  1) 
Session co-leaders, and 2) Research Team participants. Peers who participated in the pilot will 
also participate in this study, although peers at other sites, who have been screened and agree 
to participate, will also be trained in the program and develop rapport with the ostomy nurses who 
will co-lead sessions. They will also be expected to participate in weekly research calls and impart 
their thoughts on the sessions and issues that need to be addressed. They will participate in 
presentation of findings, including at local ostomy group meetings and with major publications.   
 
Peers will be trained over the phone by the PI. The curriculum and the protocol will be reviewed, 
as well as their roles, and to recommend the participant see their physician for any clinically 
related issues.  
 

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Peers will keep a log of any phone calls they receive, including date, time, length of call, and 
subject discussed. This will be relayed to site coordinators on a weekly basis.  
 
 
13.2 
OVERSIGHT COMMITTEE 
 
13.2.1. Stakeholder Advisory Committee. The SAC is designed to ensure integrity and focus of 
the study, as well as be a resource for accrual issues, unforeseen problems, and interpretation of 
results. A well-known role of Patient Advocacy groups in cooperative groups is to troubleshoot 
accrual issues and assist in finding practical solutions. In addition, unforeseen participant 
concerns are bound to appear, and an expert panel that meets regularly, as well as on an 
emergency basis, is an advantageous resource to have in a multi-site study. Finally, while the 
Research Team is experienced, ostomy nurses and peers will be on the Research Team, and we 
anticipate members of the SAC will play a role in data interpretation. 
 
13.2.2 SAC Qualifications:  The SAC will be composed of ostomy nurses, peer ostomates, 
patients, and caregivers who have participated in our program to date in Tucson or those 
recommended by clinicians at City of Hope or Yale. In addition, we will add additional members 
(peer ostomates and patients) who have completed the telehealth intervention and are interested 
in continuing to participate with the research as needed. We will have a maximum of six non-
Research Team members of the SAC, with an equitable distribution of patients and caregivers. 
The group will determine its chairperson, who will be expected to report to the Research Team. 
Members of the SAC (except the Research Team participants) will be compensated for their time 
with $100 per meeting. 
 
13.2.3 Recruitment to the SAC: Development of our recruitment plan for the SAC will occur 
during the first meeting of the Research Team at the initiation of the study. Potential SAC 
members will be reviewed by the Research Team from the first group of participants. They will be 
invited by a Stakeholder member of the Research Team. 
 
13.2.4 Meetings of the SAC:  A telephone conference line will be established for the quarterly 
meetings of the SAC. The PI will participate in the first meeting providing an overview of the study 
and outlining the responsibilities of the SAC. One leader will be designated. High priority items for 
the agenda will be related to recruitment activities. The SAC minutes will be circulated to the 
Research Team, and the SAC leader will present them at the next Research Team meeting. 
Subsequent agendas for the quarterly meetings will include a discussion of recruitment to date, 
and any problems/challenges in study implementation. Feedback to the Research Team will occur 
via minutes from the SAC. The Research Team will provide a report of the study to date at each 
meeting. Activities of the SAC will be included in the annual project reports. 
 
13.3 
WEEKLY MEETINGS 
 
Weekly meetings will be held via teleconference and include the PI, site PIs, co-investigators, 
consultants, and Peer Ostomates. Calls will be led by the PI. If he is not able, they will be led by 
Co-Investigator Dr. Sun or Co-Investigator Dr. McCorkle. There will be no call in proximity to major 
holidays. 
 
13.3.1 Call Schedule 
Calls will be held every Wednesday at 11:00am Pacific (2:00pm Eastern). 
Call number: 1-888-450-5996 

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Access code: 561908# (Leader code: 5619081#) 
 
 
14.0 
BIBLIOGRAPHY 
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Colostomies. Clin J Oncol. Nurs 2012;16:514-519. 
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CM, Ko CY. Coping and acceptance, the greatest challenge for veterans with intestinal 
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55. Hibbard J, Mahoney E, Stockard J, Tusler M. Development and testing of a short form of the 
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15.0 
APPENDICES  
 
15.1 
Appendix 1 Curriculum 
Session 1 - Introduction (5 min., Session 1, Ostomate folder) 
You are here to participate in an intervention to help in caring for and coping with your 
ostomy.  We want to remind everyone that participation is completely voluntary and you 
may withdraw at any time.  The sessions are confidential; only first names will be used.  
Please respect the privacy of others. Please do not, by any means or technology, 
photograph, video record, or audio record any portion of the OSMT Zoom video 
conferencing sessions. If you are disruptive to others, we will ask you to no longer 
participate. In your packet, there is a participant’s agreement on conduct. Please only 
one person speak at a time and allow others to talk; everyone will have a chance to 
share with the group. If you are disruptive during the session, you may be asked to 
leave that session. Remember, you can contact your local Peer Ostomate outside the 
sessions if you need additional assistance. In the interest of safety, we must remind 
everyone not to join the video conferencing sessions while driving. 
 
We also would like to do a quick roll call. Again, we will be using only first names. 
Please also tell us what kind of device you are using (e.g. iPad, Apple PC, iPhone, etc.).  
 
Before we begin, did everyone fill out the surveys either electronically or mailed? If the 
surveys were mailed to you, were they mailed back? 
 
Next, please refer to the page in your packet related to instructions for the telehealth 
connection. If you are using a smartphone or iPad, please make sure they are charged 
or plugged in, as these sessions use a lot of energy. Please mute your phone, and 
remember to unmute if you want to speak. To mute/unmute on a PC/laptop, move the 
cursor to the lower left corner of your screen until the controls appear in a bar at the 
bottom, then click on the microphone icon to toggle on/off; on a smartphone or iPad, 
touch the screen to make the controls appear and touch the microphone to toggle 
on/off. We encourage participation from everyone. If you are on a phone, you can use 
your finger to scroll over to see different participants; on a PC/laptop you can see all 

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participants at once by clicking on the Gallery View icon in the upper right corner of the 
screen. Feel free to ask questions during the session, but we hope not to spend too 
much time with technical issues. If you have connection, video, or audio problems, 
disconnect and contact the Arizona Telehealth Program helpdesk at 520-626-6978, 
then try to reconnect. If you have continued problems, we will get you technical support 
prior to the next session or before you do a makeup session. 
 
We would like to introduce ourselves as the leaders of this program (Introduction of 
Ostomy Nurse/Peer Ostomate buddies). 
 
Before we get started, we will provide an overview of the five training sessions.  Session 
1 will give you the background of an ostomy and the effects it may have on your life 
(particularly, clothing and diet).  Session 2 will provide information on your social well-
being.  For example, we will help train you in how to maintain and increase social and 
interpersonal relationships.  Caregiver Session is for your spouse/significant 
other/friend.  This session will provide your spouse/significant other/friend with 
knowledge about your ostomy and ways of coping with differences in the relationships 
since the ostomy was placed.  Session 3 will provide information on healthy lifestyles, 
psychological (finances/cancer) health, and nutritional intake specific for your new 
ostomy diet.  Session 4 will be a review session in which your spouses/significant 
others/friends are also invited to review any items that were missed and possible 
resources for help in the future. 
 
We are reimbursing each of you $50 at completion of the initial surveys, $50 at 
completion of surveys at the end of the intervention sessions, and $50 at completion of 
the follow-up surveys six months after the end of the sessions, for a total of $150. We 
are reimbursing your spouse/significant other/friend $25 for each of the two sessions 
they attend, for a total of up to $50. 
 
If no questions, we will begin. 
 
Session 1 Teaching Points (30 min) 

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A. 
Teaching Points 
1. 
What is an Ostomy? 
a. 
An ostomy is a surgical opening onto the abdomen. There are three 
common types of ostomies which will be discussed. 
i. 
Colostomy—created by bringing a portion of the large intestine 
through an opening on the abdomen. 
ii. 
Ileostomy—created by bringing a portion of the ileum (small 
intestine) through an opening on the abdomen. 
iii. 
Urostomy (typically known as an Ileal Conduit)—created when 
bladder has been removed.  A small piece of small intestine (ileum) is 
surgically removed and used as a conduit.  Occasionally large bowel is 
used. The two ureters from the kidneys are attached to this piece of ileum 
creating the conduit.  The one end of bowel is sutured closed and the 
other end of the conduit is brought out through the abdominal wall creating 
the stoma. 
 
2. 
Characteristics of a healthy stoma. 
a. 
Stoma is not painful.  It has no nerve endings. 
b. 
Always red and moist. 
c. 
May bleed easily. 
 
3. 
Associated diseases that can lead to an intestinal ostomy 
a. 
Cancer – the focus of this program 
i. 
Rectal Cancer 
ii. 
Colon Cancer 
iii. 
Other cancers 
a) 
Inflammatory Bowel Disease 
b) 
Diverticulitis 
c) 
Injury 
 
4. 
Associated diseases that can lead to a urinary ostomy 
a. 
Bladder Cancer - the focus of this program 
b. 
Injury 
 
5. 
What type of ostomy do you have? 
a. 
What is your understanding of your ostomy? 
b. 
What are your goals as an ostomate (person with an ostomy)? 
c. 
An ostomy may be temporary or permanent.  Which do you have? 
d. 
How do you feel about your ostomy? 
 
6. 
Be familiar with how you react to different appliances/pouches and certain foods 
 
7. 
If your ostomy supplies make you feel uncomfortable, try another pouching 
system 
 

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8. 
Clothing 
a. 
Immediate changes after surgery, but once healed the optimal goal is to 
be in pre-operative clothing 
b. 
Must be recognized that you may not feel comfortable with old clothing 
c. 
New clothing options 
i. 
Suspenders 
ii. 
Loose fitting clothes 
iii. 
Overalls 
vi. 
Specialized clothing http://www.securicaremedical.co.uk/clothing-
for-ostomates.asp 
 
9. 
Effects of Nutritional Intake 
a. 
Foods or types of foods affect everyone differently, so it is important to 
determine certain foods to avoid or not eat before certain occasions 
i. 
Examples: Spicy foods, nuts, and seeds 
ii. 
Food or types of foods that are helpful 
iii. 
Plenty of fluids (water or juices), particularly in ileostomate and 
urostomate 
 
Session 1 Equipment Skills Lab (30 min.) 
B. 
Skills Lab 
We recognize many people are not comfortable with ostomy supplies yet.  This part of 
the session is to review current and other possible options available in the future. 
 
1. 
Checking out the equipment: Appliances, Pouches, Belts 
 
2. 
Skin Preps: Helps lengthen wear time of wafer and pouch, and prevents skin 
irritation 
 
3. 
Skin Adhesive Removers 
a. 
Used to remove adhesive after applying the wafer and pouch (Not 
recommended for routine use) 
b. 
Some ostomates find it easier to reapply wafer if some adhesive is left on 
the skin 
 
4. 
Deodorizers 
a. 
Used to reduce odor 
b. 
Tablet form you eat or drop into pouch 
c. 
Vents are also available to apply to pouch to release gas and deodorize it 
as it passes through the vent 
 
5. 
Stoma Patches and Caps 
a. 
Used to prevent leakage when colostomy is irrigated and stool is 
controlled 
i. 
Pouch Covers: A cover that goes around your pouch to absorb 
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ii. 
Convexity 
a) Skin irritation can occur from leakage on the skin 
b) Use of convex wafer makes the stoma protrude from skin and 
redirects flow of urine or feces into pouch 
 
6. 
Pouches 
a. 
One Piece System 
i. 
The wafer and pouch are attached as one unit 
ii. 
Advantages 
a) 
Quick and easy to use 
b) 
Less Bulky (One vs. Two Parts) 
b. 
Two-Piece System 
i. 
The wafer and pouch are two separate pieces and are attached by 
attaching the wafer connecter to the pouch connector 
ii. 
Advantages 
a) 
Can change bag size for different moments 
b) 
Easier to relieve gas 
iii) 
Disadvantage 
a) 
Since attached wafer to bag, error may occur causing 
leakage 
b) 
May be difficult to attach wafer to pouch and abdomen if 
ostomate is visually impaired 
 
7. 
Belts 
a. 
Some ostomates prefer to wear a belt 
i. 
Attach to wafers using a special tag 
 
8. 
Daily Care 
a. Colostomy bag should be emptied when reaches 1/3 gas or stool 
i. 
Achieve pouch adherence up to 5 days 
b. 
If you use the reusable pouches, make sure they are thoroughly cleaned 
with mild soap and water 
 
9. 
Disposal of ostomy bag 
 
10. 
Reviewing Routines 
 
11. 
Emergency Kits 
 
Session 1 Assignments (5 min) 
C. 
Assignments 
1. 
Goal Development for Session 2 
When you completed the first survey packet, it contained a goal development sheet. We 
are now going to ask you to please describe the goals you have in regards to your 
ostomy care. 
 

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2. 
Monitoring timed daily outputs/Nutrition Log by Time 
Please monitor your daily bowel movements and how they are affected by different 
situations or foods.  These will be discussed at upcoming sessions and will be useful if 
issues were written down. 
 
Session 1 Resources (5 min) 
D. 
Resources  
Please refer to the section in your packet for resources outside of this training session. 
If you wish to contact one of the Peer Ostomates outside of this session, their phone 
numbers are: [read off name and phone number of Peers] 
 
 
Connectivity 
E. Prior to disconnection, we want to ask on a scale of 1-4 your ability to connect to the 
session and your impression of the technology.  
 

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Session 2 - Introduction (5 min., Session 2, Ostomate folder) 
We want to remind everyone that participation is completely voluntary and you 
may withdraw at any time.  The sessions are confidential only first names will be 
used.  Please respect the privacy of others.  Are there any questions from last 
session?  
 
We are now going to do a quick roll call, using first names only.  Please also tell 
us what kind of device you are using (e.g. iPad, Apple PC, iPhone, etc.). 
 
Session 2 Scenarios (40 min) 
A. 
How to maintain and increase social/interpersonal relationships 
 
Some ostomates who have an ostomy have problems in social/interpersonal 
relations.  The major goal of this session is to maintain and increase your social 
and interpersonal skills.  Please use the following scenarios to guide our 
conversations. 
 
1. 
Scenarios-Paired discussion 
a. 
How to describe to others 
i. 
Dating 
a) 
You are out on a new date 
b) 
You are intimate for the first time with new partner 
ii. 
Spouse/Significant Other  
a) 
You are talking with your spouse about your ostomy 
b) 
Initiating intimacy with spouse for first time since 
surgery 
iii. 
Social Activities 
a) 
Explaining why you are leaving the room to change 
your bag 
b) 
Explaining why you may need help changing your 
pouch 
iv. 
Other Family Members; e.g. Children/Grand Children 
v. 
Practice Talking about ostomy 
vi. 
What to do about Gas/Odor 
a) 
During job interview your ostomy makes noise  
b) 
You are at church and someone notices a bulge on 
the side of your clothing and asks about the bulge 
vii. 
Other 
a) 
Are there any scenarios you would like to discuss 
 
2. 
Scenarios-Group Discussion  
a. 
Out into public everyday 
Please describe any ways that you may cope with your ostomy out in 
public every day.  For example, how do you deal with public restrooms? 
 

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b. 
Timing of Intestinal activity in relation to social interactions 
Please describe any types of foods you avoid or ostomy care techniques 
before you go out for social occasions. 
 
c. 
Sexuality and Intimacy 
Please describe any issues you may have with sexuality and intimacy.  
For example, is your sexual activity the same as before your ostomy? 
 
d. 
Finding an Ostomate Buddy 
Please describe any issues you may have or have already encountered 
related to finding a person that you can talk to about issues related to your 
ostomy. 
 
e. 
Psychological Impact 
Please describe any psychological impact you may have had from your 
ostomy.  For example, you don’t feel like going out sociably since your 
ostomy. 
 
f. 
Managing Morbidities 
Please describe any preexisting conditions that may influence the daily 
care of your ostomy and how you have dealt with the limitations as a result 
of the condition. 
 
g. 
Managing other symptoms (fatigue, etc.) 
Please describe how you have managed any other symptoms you may 
have related to your ostomy.  For example, you are too tired to go out to 
the store to go shopping. 
 
h. 
Other 
Please describe any other issues you would like to discuss as a group. 
 
Session 2 Problem-Solving Training (20 min) 
B. 
Being Prepared: Creating an Emergency Ostomy Care Kit  
It is very important to be prepared to care for your ostomy when away from 
home.  Many ostomy supply companies have an emergency kit that works well 
when issues arise when away from the comforts of your home.  These kits can 
be purchased or created by yourself geared towards your needs.  Here are some 
examples. 
1. 
Review Products and equipment  
i. 
Being Prepared when away from home 
a. 
A kit for extra supplies, extra pouches, and cleaning packet 
b. 
Extra Clothes/undergarments 
c. 
Water Bottles 
d. 
Other? 
i) 
What to do if pouch leaks? 
 

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Session 2 Assignments (10 min) 
C. 
Assignment  
1. 
Goal Development and review 
Using the Goal Development sheet please review the goals you have in regards 
to your ostomy care. 
 
2. 
Practice talking with one new person 
In the period before your next session please take the time and talk with a new 
person about your ostomy.  For example talk with your neighbor or family 
member who is not your caregiver.  Please fill out worksheet and let us know 
how the interaction went. 
 
Session 2 Resources (5 min) 
D. 
Resources 
Please refer to the section in your folder for possible resources outside of this 
training session.  We are now going to review the resources. If you wish to 
contact one of the Peer Ostomates outside of this session, their phone numbers 
are: [read off name and phone number of Peers] 
 
 
Connectivity 
E. Prior to disconnection, we want to ask on a scale of 1-4 your ability to connect 
to the session and your impression of the technology.  
 
We also want to remind you that the Caregiver session is for your support 
persons only and both you and your support person will have the opportunity to 
attend Session 4 together. If you need to assist your support person in setting up 
the videoconference connection for the session, we ask that you please do that 
and then leave the room. 

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Caregiver Session - Introduction (10 min., Caregiver Session, 
Spouse/significant other/friend folder) 
We want to remind everyone that participation is completely voluntary and you may 
withdraw at any time.  The sessions are confidential only first names will be used.  
Please respect the privacy of others.   
 
We also want to remind you that this session is for support persons only and both 
ostomates and support persons will have the opportunity to attend Session 4 
together. If ostomates need to assist their support person in setting up the 
videoconference connection for the session, we ask that you please do that and 
then leave the room. 
 
Before we begin, we will do a quick roll call using first names only. Please also tell us 
what kind of device you are using (e.g. iPad, Apple PC, iPhone, etc.). 
 
This is a study examining training sessions geared at enhancing ostomy self-
management for cancer survivors.  You are here because you are a 
Spouse/Significant Other/ Friend of someone that has an ostomy. 
 
The purpose of this session is to address the support and adjustment of you as 
caregivers/family support group members to a person with an ostomy. This session 
will provide the opportunity for you to ask questions about ostomies and ostomy care.  
This session, lasting about an hour to an hour and a half, will include a 10 min class 
evaluation form.  The things that will be discussed during the session may create a 
risk of embarrassment in talking about and learning to care for an ostomy.  You will 
not be forced in any way to speak in front of others if you feel embarrassed. Although 
we have tried to avoid risks, you may feel that some questions [or tasks] we ask you 
to do may be stressful or upsetting.  If this occurs you can stop participating 
immediately. 
 
By providing the same training session to you that the ostomate receives, it may 
improve your ability to support them as they learn ostomy self-care skills and adjust 
to having an ostomy.  You will be paid up to $50 dollars for participating ($25 for each 
of two sessions attended). 
 
Caregiver Session Teaching Points (10 min) 
A. 
Teaching points 
1. 
What is an ostomy? 
a. 
Colostomy—created by bringing a portion of the large intestine 
through an opening on the abdomen. 
b. 
Ileostomy—created by bringing a portion of the ileum (small 
intestine) through an opening on the abdomen 
c. 
Urostomy (typically known as an ileal conduit)—created when 
bladder has been removed.  A small piece of small intestine (ileum) is 
surgically removed and used as a conduit.  Occasionally large bowel is 
used.  The two ureters from the kidneys are attached to this piece of ileum 

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creating the conduit.  The one end of conduit if sutured closed and the 
other end of conduit is brought out through the abdominal wall creating a 
stoma. 
 
2. 
Characteristics of a healthy stoma 
a. 
Stoma is not painful.  It has no nerve endings 
b. 
Always red and moist if healthy stoma 
c. 
May bleed easily 
 
3. 
Associated diseases that can lead to an intestinal ostomy 
a. 
Cancer 
i. 
Rectal cancer  
ii. 
Colon cancer 
iii. 
Other cancers 
b. 
Inflammatory Bowel Disease 
c. 
Diverticulitis 
d. 
Injury 
 
4. 
Associated diseases that can lead to a urinary ostomy 
a. 
Bladder cancer 
b. 
Injury 
 
5. 
What type of ostomy does your ostomate have? 
a. 
What is your understanding of an ostomy 
b. 
What are your goals as a caregiver of an ostomate 
c. 
An ostomy may be temporary or permanent.  What type does your 
ostomate have? 
d. 
How do you feel about his/her ostomy? 
 
6. 
Are you familiar with the different pouching systems?  
 
7. 
Clothing 
a. 
Does your ostomate have any problems with clothing? 
 
8. 
Effects of Nutritional intake 
a. 
Foods or types of foods affect everyone differently, so it is 
important to determine certain foods to avoid or not eat before certain 
occasions 
i. 
Examples:  Spicy foods, nuts and seeds 
ii. 
Food or types of foods can be healthful 
iii. 
Important to drink plenty of fluids, particularly an ileostomate 
or urostomate 
 
Caregiver Session Major Issues (30 min) 
A. 
Major issues of experience and ostomy care 

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We are going to discuss major issues or experiences of ostomy care with 
spouses/significant other/friends of ostomates with ostomies. In particular we 
want to know what you already know about ostomy care, issues you feel you 
need to know, possible caregiving goals, and how to deal with ostomy care 
issues. 
 
1. 
What do they know?  
What does everyone know about ostomy care? 
 
2. 
What do they need to know? 
What are some issues you would like to know related to ostomy care? 
 
3. 
What are your caregiving goals? 
a. 
Are you the primary care taker? Are other family/friends involved in 
caregiving? 
i. 
QOL is better if they are their own caretaker 
ii. 
How independent is the patient with ostomy and what is your 
role with the ostomy? 
iii. 
Any other medical problems that prevents the patient from 
being their own caregiver? 
 
4. 
How to deal with ostomy care issues 
a. 
Odor and leakage  
b. 
Place to do care 
c. 
Set up bathroom 
d. 
Procedure to get rid of full bags 
e. 
Do you have an emergency kit? 
f. 
Disposal of ostomy bag 
 
5. 
Review Equipment 
 
Session 3 Nutritional Dietary Issues (5 min) 
B. 
Nutrition/Dietary issues 
We are going to discuss possible Nutritional/Dietary issues related to their 
ostomy.  In particular are there any foods that cause increased intestinal activity? 
 
1. 
Who does the grocery shopping and cooking? 
 
2. 
If spouse/significant other/Friend does the grocery shopping do you buy 
specific items for the ostomate? 
 
3. 
Review Nutritional log  
Please refer to the folder for your spouse/significant other/Friend’s nutritional 
logs. 
a. 
Is there any food in particular that affects your spouse/significant 
other/Friend? 

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Caregiver Session Clothing Issues (5 min) 
C. 
Clothing issues  
1. 
Immediate changes after surgery 
 
2. 
Once healed optimal goal is to be in pre-operative clothing 
 
3. 
Must be recognized that you may not feel comfortable with old clothing 
 
4. 
New Clothing options 
a. 
Suspenders 
b. 
Loose Fitting Clothes 
c. 
Overalls 
d. 
Specialized Clothing 
i. 
http://www.securicaremedical.co.uk/clothing-for-
ostomates.asp 
 
Caregiver Session Sexual Intimacy (10 min) 
D. 
Sexuality/Intimacy 
We are going to discuss sexuality and intimacy with an ostomate.  This topic is 
sometimes difficult to talk about so please remember to respect others in the 
session.  We would like to open up a conversation on how you can help support 
intimacy and sexuality in your relationships with an ostomate. 
 
1. 
Ostomy can create sexuality/Intimacy problems for ostomates and 
caregivers 
An ostomate is influenced in many ways by their ostomy.  Your partner may not 
want to be intimate because of the ostomy.  It is important for you to encourage 
dialogue with your spouse/Significant other/Friend concerning intimacy and the 
other issues discussed in this training session. 
 
2. 
Preoperative information from surgeon and if enough time to adjust to the 
idea of sexual impairment 
a. 
What did you understand about the process from surgeon? 
b. 
Did radiation therapy cause sexual problems before the ostomy? 
 
Caregiver Session Resources (10 min.) 
E. 
Resources 
Do you have the resource list given to the ostomate? If not, would you like one 
either emailed or paper mailed to you? If you wish to contact one of the Peer 
Ostomates outside of this session, their phone numbers are: [read off name and 
phone number of Peers] 
 
Connectivity 
F. Prior to disconnection, we want to ask on a scale of 1-4 your ability to connect 
to the session and your impression of the technology. 

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Session 3 - Introduction (5 min., Session 3, Ostomate folder) 
We want to remind everyone that participation is completely voluntary and you 
may withdraw at any time.  The sessions are confidential only first names will be 
used.  Please respect the privacy of others.  This session focuses on nutrition, 
healthy lifestyles, and finances.  
 
We will now do a quick roll call using first names only. Please also tell us what 
kind of device you are using (e.g. iPad, Apple PC, iPhone, etc.). 
 
Are there any questions from the last session? 
 
Session 3 Nutrition and Education Timing (15 min) 
A. 
Nutrition and education timing, specific foods (Group Discussion) 
 
1. 
Review of nutritional logs as a group 
a. 
What foods give you gas? 
b. 
What foods increase the number of daily bowel movements? 
c. 
What foods are helpful 
 
Session 3 Healthy Lifestyles (10 min) 
B. 
Implementing a healthy living style  
There are many ways of implementing healthy lifestyles.  Below are a few items 
related to healthy lifestyles: 
 
1. 
Daily activities 
The goal is to do everything you did before your surgery. What daily activities did 
you do before your surgery? Some examples are: 
 
a. 
Lawn Mowing 
b. 
Motorcycle Riding 
c. 
Leisure Swimming 
 
Are you able to still do these activities? 
 
2. 
Exercise 
It is important to continue the exercise regimen you had before your surgery.  
What types of exercises did you do before your surgery?  If you did little to no 
exercise this would be a great opportunity to start.  Some examples are: 
a. 
Running 
b. 
Swimming laps 
c. 
Daily Walking 
 
3. 
Nutrition 
This would be a great opportunity to improve your diet and here are some basic 
suggestions: 

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a. 
Daily Caloric intake is recommended to be 2,000 but depends on 
body features 
b. 
Moderate portions 
c. 
Eat fruits and vegetables – for bowel function and healthy living 
d. 
Plenty of fluids—10-12 glasses of water or juice daily. (Coffee, tea, 
carbonated beverages do not count!) 
 
4. 
Smoking Cessation 
Do we have any smokers in the group?  If so this would be a great opportunity to 
quit. We have listed some resources in your packet.  
 
Session 3 Psychological Health (10 min) 
C. 
Psychological Health 
We have focused on issues related to your ostomy but we also recognize that 
you recently have been diagnosed with cancer.  Review these selected issues 
below and determine how these issues have affected you.  We would like to 
discuss some of these issues now. 
 
1. 
Revaluate Life 
a. 
Have you revaluated your priorities in life? 
 
2. 
Set New Priorities 
a. 
Based on treatments are there new priorities in life? 
 
3. 
Second Chance to live 
a. 
Do you view your ostomy as a chance to live? 
 
4. 
Life altering, not life threatening 
a. 
Do you view your ostomy as an impediment on life? 
 
5. 
Changing attitudes 
a. 
May need to change negative friends 
 
6. 
Review Psychological impact 
a. 
Do you still feel like going out for social occasions? 
 
7. 
Talk about cancer and perceived needs  
Please use this opportunity to discuss any Issues with cancer survivorship 
 
a. 
Have you ever had any other form of cancer other than colorectal 
cancer? 
b. 
Other issues? 
 
8. 
Possible sexual/intimacy issues after cancer treatment 
a. 
Impotency  
b. 
Scarred tissue 

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9. 
Moods 
Please describe any moods that you have experienced since your cancer 
diagnosis 
 
Session 3 Problem-Solving Training (15 min) 
D. 
Being Prepared for Traveling  
We are going to review equipment and tips for traveling with your ostomy.  It is 
important to always be prepared.  If traveling out of the country or to a remote 
area your particular items may not be available. 
 
1. 
Review Products, equipment, and tips for traveling 
i. 
You can obtain a Travel Certificate 
ii. 
Availability of WOCN in the area  
 
Session 3 Finances (10 min) 
E. 
Finances 
Finances can affect an individual’s Quality of Life.  These can come from 
bad/lack of insurance or loss of employment due to your ostomy.  
 
1. 
Possible problems with ostomy supplies cost 
 
2. 
Employment issues 
a. 
Loss of jobs 
b. 
Not able to perform same duties at work 
i. 
Switch jobs 
ii. 
Unemployment 
 
Session 3 Assignments (10 min) 
F. 
Assignment 
1. 
Goal Development and Review 
Using the Goal Development sheet please review the goals you have in regards 
to your social and interpersonal well-being. 
 
Session 3 Resources (5 min) 
G. 
Resources 
Please refer to the section in your folder for possible resources outside of this 
training session.  Each week resources will be provided with a different list of 
resources relating to the topics discussed that session. If you wish to contact one 
of the Peer Ostomates outside of this session, their phone numbers are: [read off 
name and phone number of Peers] 
 
 
Connectivity 
H. Prior to disconnection, we want to ask on a scale of 1-4 your ability to connect 
to the session and your impression of the technology.  

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Session 4 – Review Session Introduction (5 min., Session 4, Ostomate folder) 
We want to remind everyone that participation is completely voluntary and you may withdraw 
at any time.  The sessions are confidential only first names will be used.  Please respect the 
privacy of others.  This session focuses on different techniques for ostomy care and will cover 
any items not reviewed because of time constraints of the previous sessions.  The new faces 
on the call are your spouses, significant others, and friends.   
 
At this time we will do a quick roll call please using only first names. For those who are new on 
the call, please introduce yourself to the group.  Please also tell us what kind of device you are 
using (e.g. iPad, Apple PC, iPhone, etc.). 
 
Are there any questions from last session? 
 
Session 4 Daily Care (15 min) 
A. 
Review Daily care, new products, etc. 
Please use this time to discuss any new products or techniques that have worked well for you. 
Note: Please review elements for section E.  If there is relevance discuss in this section. 
 
1. 
Different techniques for management 
a. 
Irrigation 
i. Though not widely used anymore different people are comfortable with 
different things. 
ii. Irrigation is the process that the stoma is irrigated with water 
iii. This method must be used for a while 
b. 
What are some other techniques? 
 
Session 4 Psychological Impact (15 min) 
B. 
Discuss Psychological Impact 
Please use this time to discuss any psychological effects your ostomy may have had on you.  
These may include social phobias or depression. NOTE:  Please review elements for section 
E.  If there is relevance discuss in this section.  
 
Session 4 Specific Issues (15 min) 
C. 
Talk about problems 
Please use this time to take specific problem you may have and we will discuss as a group 
possible solutions.  NOTE:  Please review elements for section E.  If there is relevance discuss 
in this section 
 
Session 4 Nutritional Timing (15 min) 
D. 
Nutrition/Exercise timing 
Please use this time to discuss any issues related to food timing or any possible solutions you 
have developed to alleviate these problems.  NOTE:  Please review elements for section E.  If 
there is relevance discuss in this section. 
 
Session 4 Program Review (15 min) 

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E. 
Review Content from sessions 1-4 
NOTE:  This section will change by cohort.  Information missed during each session will be 
discussed in the weekly teleconferences and will determine if it is important enough to review 
given the time constraints.  
 
Session 4 Survey reminders 
Please take this time to fill out the surveys electronically or what has been mailed to you as 
soon as possible after this session. We hope you enjoyed and benefitted from these sessions. 
In addition, you will be getting reminders and mailings if you prefer for follow-up surveys in six 
months. Are there any questions? If not, thank you and goodbye. 
 
Connectivity 
F. Prior to disconnection, we want to ask on a scale of 1-4 your ability to connect to the 
session and your impression of the technology.  
 
 
 
 

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15.2 
Appendix 2a COH-QOL-CRC (full survey) 
 
Survey: City of Hope Quality of Life baseline questions 
 
 
Subject ID 
 
 
 
 
 
 
 
 
Today’s Date (month/day/year) 
 
 
 
/
/
  
 
 
Ostomy Location/Care/Pre-Op 
1. What kind of ostomy do you have?  
Colostomy 
 
   
Ileostomy 
 
 
Urostomy 
 
  
Don’t Know 
 
 
2. If you have a urinary ostomy, please skip this question.  If you have an ileostomy or colostomy, 
was it supposed to be permanent or temporary? 
 
 
Permanent 
 
  
Temporary 
 
  
Don’t Know 
 
 
3. Please mark with an X on the figure of an abdomen the location of your ostomy?  
 
 
 
 
 
 
 
 
 
  
RIGHT 
 
 
 
 
 
LEFT 
 
  
  SIDE  
 
 
 
 
 
SIDE 
 
 
  
 
             ----------------------------------------- 
 
 
 
 
 
 
 
 
 
3b. Please choose one of the following to describe the location of your ostomy? 
 

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 Lower Left Side; 
 Lower Right Side;  
 Upper Left Side;  
 Upper Right Side 
 
4. Does the location of your ostomy cause problem with clothing? 
 
 Yes; 
 No 
 
5. Does this location of your ostomy cause you other problems? (if yes, please explain below) 
 
__________________________________________________________________________ 
 
__________________________________________________________________________ 
 
__________________________________________________________________________ 
 
6. Have you changed the style of clothing you wear because of your ostomy? 
 
 Yes; 
 No 
 
7. Was your abdomen marked for the ostomy site before your surgery? 
 
 Yes; 
 No 
 Don’t remember 
 
8. Did a nurse specialist (ostomy nurse) or physician explain your ostomy prior to your surgery? 
 
 Yes; 
 No 
 Don’t remember 
 
9. Did a nurse specialist (ostomy nurse) help you learn to care for your ostomy after your surgery? 
 
 Yes; 
 No 
 Don’t remember 
 
 
Sexual Activity 
 
10.  Were you sexually active before getting your ostomy? 
 
 
 Yes; 
 No 
 
11. Have you been sexual activity since having your ostomy? 
 
  
 Yes; 
 No 
 
12.  Are you currently sexually active? 
 

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 Yes; 
 No 
 
 
12b. If you ARE NOT currently sexual active, are you fearful of resuming sexual activity?  
 
 
 Yes; 
 No 
 
 
12c. If you ARE NOT currently sexual active, is that a problem for you?  
 
 
 Yes; 
 No 
 
 
 
12d. If you ARE currently sexual active, is there fear or anxiety associated with sexual activity?  
 
 
 Yes; 
 No 
 
 
12e. If you ARE currently sexual active, is your sexual activity satisfying?  
 
 
 Yes; 
 No 
 
13. Is undressing in front of your partner after your Ostomy a problem? 
 
Not a problem,  
A little problem, 
Somewhat a problem,  
Very much a problem,  
NA 
 
 
14.  
 
 
 
 
 
 
 
 
 
 
 
15.  
 
 
 
Females Only 
 
 
 
Have you ever had a problem with… 
 
Prior to Ostomy 
After Ostomy 
Currently 
a. Vaginal Dryness  
 Yes 
 No 
 
 Yes 
 
No 
 
 Yes 
 No 
 
b. Vaginal 
stricture(narrowing) 
 Yes 
 No 
 
 Yes 
 
No 
 
 Yes 
 No 
 
c. Vaginal Pain  
 Yes 
 No 
 
 Yes 
 
No 
 
 Yes 
 No 
 

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Males Only 
Have you ever had a problem with… 
 
Prior to Ostomy 
After Ostomy 
Currently 
a. Getting an Erection 
 Yes 
 No 
 
 Yes 
 
No 
 
 Yes 
 No 
 
b. Maintaining an Erection 
 Yes 
 No 
 
 Yes 
 
No 
 
 Yes 
 No 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Diet 
16.  In a typical day,  
a. how many meals other than snacks do you eat? 
____________ 
b. How many snacks do you eat?  
____________ 
c. How many 8 oz cups of liquid do you drink?  
(Please count all beverages such as water, tea,  
coffee, soft drinks, and juices.  
Do not include alcoholic beverages) 
____________ 
d. How many alcoholic beverages do you drink? (Please 
count all beer, wine, and liquor. Note: one drink is 
equal to one shot of liquor, 12 oz can or bottle of beer, 
or one glass of wine) 
 
 
 
17.  How would you describe your current diet? (Check all that apply) 
 
 High protein, low carb 
 Fast Foods 
 Diabetic 
 Vegetarian 
 Vegan 
 Heart Healthy 
 No Special Diet 
 Other _________________ 
 
18.  Because of your ostomy, have you adjusted your diet? 
 
 Yes; 
 No 
 
19.  How long after your ostomy surgery did you feel comfortable with what you eat? 
 
< 1 month;  
1-12 months;   
>12 months;  
 I am still not comfortable 
  

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Physical Activities 
 
20. Considering a typical 7-day period (a week) in the past month, how many times on average did 
you do any of the following kinds of exercise for more than 15 minutes during your free time and 
for how long per exercise session (in minutes)?  
 
Please write the number of times per week in the first box and the average amount of time for 
each exercise session in the second box. If you did no recreational activity in the past month, 
please put a zero (0) in the spaces provided. Please do not leave blanks. 
 . 
 
a. 
Strenuous Activity (heart beats rapidly, heavy sweating) 
 
____times per week  ____average minutes 
 
b. 
Moderate Activity (not exhausting, light sweating) 
 
____times per week  ____average minutes 
 
c. 
Mild Activity (minimal effort, no sweating) 
 
____times per week  ____average minutes 
 
d. 
How does the past 30 days of activity reflect your normal activities? 
 More  
 Less 
 Same 
 
 
 
Smoking 
 
21.  Which of the following best describes your smoking history? 
 
I am a current smoker  skip to question 23 
I have never smoked  skip to question 24 
I once was a smoker  please answer question 22, 24 
 
22. If you used to smoke but have stopped when did you quit?  ______ Year 
 
23.  If you are currently a smoker or have been a smoker in the past: 
 
a. How many cigarettes per day on average? ________ 
b. How many total years of smoking: ____________ 
 
24. Do you currently use other tobacco products (chewing tobacco, snuff, pipes, cigars, etc.)? 
 

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 Yes; 
 No 
  
 
 
 
Demographics 
 
25. What is the level of school you have completed? Did not complete high school 
 
 
 
Completed high school /GED 
 
 
 
Vocational/secretarial/business 
 
 
 
Some college 
 
 
 
College degree 
 
 
 
Some graduate school 
 
 
 
Completed graduate degree 
 
 
26.  What is your height? 
________ Feet, _______ Inches 
 
27.  What is your current weight? 
________ Pounds 
 
28.     What was your approximate weight at the time of your surgery? 
________ Pounds 
 
29.  Is your ethnicity Hispanic, Latino, or Chicano? 
Yes 
 
 
 
No 
 
 
30.  What race do you consider yourself? 
White 
 
  
Black or African American 
 
  
American Indian or Alaska Native 
 
  
Asian 
 
  
Native Hawaiian or Other Pacific Islander 
 
  
Other 
 
  
More than one race (Please specify) 
 
 _________________________________________________________________ 
 
 _________________________________________________________________ 
 
31. What is your current annual income of your household? 
<15,000 
 
  
15,000-30,000 
 
  
30,001-50,000 
 
  
50,001-75,000 
 
  
75,001-100,000 
 
  
greater than 100,000 
 
  
 
32. What was your marital/partner status immediately prior to your ostomy? (please choose one) 
 
 

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Single; 
Married; 
Divorced; 
Widowed; 
Separated; 
Partnered 
 
33.  What is your marital/partner status now? 
 
Single; 
Married; 
Divorced; 
Widowed; 
Separated; 
Partnered 
 
34. If your marital status has changed, was it a result of your ostomy?  
Yes 
 
 
 
No 
 
 
 
 
 

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15.2 
Appendix 2b COH-QOL-CRC (scaled items only) 
Survey: City of Hope Quality of Life Colorectal Cancer (COH-QOL-CRC) scaled items 
 
 
Subject ID 
 
 
 
 
 
 
 
 
Today’s Date (month/day/year) 
 
 
 
/
/
  
 
Directions: We are interested in knowing how the experience of having an ostomy affects your 
quality of life.  Please answer all of the following questions based on your life at this time. 
 
Please fill in the bubble 0-10 that best describes your experiences.  For example: 
How difficult is it for you to climb stairs?  
Not at all difficult  
 
 
 
 
 
Extremely Difficult  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
Filling the bubble “2” would mean you have some but not a lot of difficulty climbing stairs. 
Related to your ostomy, to what extent are the following a problem for you at this time?  
____________________________________________________________________________________ 
Quality of Life 
 
Related to your ostomy, to what extent are the following a problem for you at this time? 
 
1.  Physical Strength 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
2.  Fatigue 
      
 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
3.  Skin Surrounding the Ostomy 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
4.  Sleep Disruptions 
      
 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
5.  Aches or Pains 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
6.  Gas 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 

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0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
7.  Odor 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
8.  Constipation 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
9.  Diarrhea 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
10.  Leaking from pouch (or around appliance) 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
11.  Over-all physical well being 
       
 
no problem  
 
 
 
 
 
severe problem  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
12.  How difficult has it been for you to adjust your ostomy? 
not at all 
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
 
13.  How useful do you feel? 
not at all 
 
 
 
 
 
 
extremely useful  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
14.  How much satisfaction or enjoyment in life do you feel? 
none at all 
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
15.  How much are you embarrassed by your ostomy? 
not at all 
 
 
 
 
 
 
extremely embarrassed 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
16.  How good is your overall quality of life? 
extremely poor 
 
 
 
 
 
excellent  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
17.  How is your ability to remember things? 
       
extremely poor 
 
 
 
 
 
excellent  
 
 
 
 
 
 
 
 
 
 
 
 
 

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0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
18.  How difficult is it to look at your ostomy? 
             
not at all 
 
 
 
 
 
 
extremely Difficult  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
19. How difficult is it for you to care for your ostomy? 
not at all 
 
 
 
 
 
 
extremely Difficult  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
20.  Do you feel like you are in control of things in your life? 
not at all 
 
 
 
 
 
 
completely  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
21.  How satisfied are you with your appearance?  
not at all 
 
 
 
 
 
 
extremely satisfied  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
22.  How much anxiety do you have? 
none at all 
 
 
 
     
 
 
severe  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
23.  How much depression do you have? 
none at all 
 
 
 
 
 
 
severe  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
24.  Are you fearful that your disease will come back? 
not at all 
 
 
 
 
 
 
extremely fearful 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
25.  Do you have difficulty meeting new people? 
not at all 
 
 
 
 
 
 
extreme Difficulty  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
26. How much financial burden resulted from your illness or treatment? 
not at all  
 
 
 
 
 
 
extreme 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
27.  How distressing has your illness been for your family? 
not at all 
 
 
 
 
 
 
extremely distressing  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
28.  How much does your ostomy interfere with your ability to travel? 
not at all 
 
 
 
 
 
 
completely  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 

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29.  Has your ostomy interfered with your personal relationships? 
not at all 
 
 
 
 
 
 
completely  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
30.  How much isolation is caused by your ostomy? 
none  
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
31.  Is support from friends and family sufficient to meet your needs? 
not at all 
 
 
 
 
 
 
extremely  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
32. Has your ostomy interfered with your recreational/sports activities? 
not at all 
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
33.  Has your ostomy interfered with your social activities? 
      
 
not at all 
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
34.  Has your ostomy interfered with your ability to be intimate? 
     
 
not at all 
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
35.  Do you have enough privacy at home for doing your ostomy care? 
      
 
not at all 
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
36.  Do you have enough privacy when traveling for conducting your ostomy care? 
      
 
not at all 
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
37.  How much uncertainty do you feel about your future? 
none at all 
 
 
 
 
 
 
extreme  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
38.  Do you sense a reason for being alive? 
not at all 
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
39.  Do you have a sense of inner peace? 
      
 
not at all 
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
40.  How hopeful do you feel? 

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not at all 
 
 
 
 
 
 
extremely   
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
41.  Is support you receive from personal spiritual activities such as prayer or meditation sufficient 
to meet your needs? 
not at all 
 
 
 
 
 
 
completely  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
42.   Is support you receive from religious activities such as prayer pr meditation sufficient to meet 
your needs? 
not at all 
 
 
 
 
 
 
completely  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
43. Has having an ostomy made positive changes in your life? 
not at all 
 
 
 
 
 
 
a great deal  
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
0 
 1 
 2 
 3 
 4 
 5 
 6 
 7 
 8 
 9 
10 
 
 
 

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15.3 
Appendix 3 HADS 
 
 

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15.4 
Appendix 4 Patient Activation Measure 
PATIENT ACTIVATION MEASURE 
Below are some statements that people sometimes make when they talk about their health.  Please indicate how much 
you agree or disagree with each statement as it applies to you personally by circling your answer.  If the statement does 
not apply to you, circle N/A. 
Your answers should be what are true for you and not just what you think the doctor wants you to say. 
When all is said and done, I am the person who is responsible for 
managing my health condition 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
Taking an active role in my own health care is the most 
important factor in determining my health and ability to function 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I am confident that I can take actions that will help prevent or 
minimize some symptoms or problems associated with my 
health condition 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I know what each of my prescribed medications do 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I am confident that I can tell when I need to go get medical care 
and when I can handle a health problem myself 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I am confident I can tell my health care provider concerns I have 
even when he or she does not ask 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I am confident that I can follow through on medical treatments I 
need to do at home 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I understand the nature and causes of my health conditions(s) 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I know the different medical treatment options available for my 
health condition 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I have been able to maintain the lifestyle changes for my health 
that I have made 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I know how to prevent further problems with my health 
condition 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I am confident I can figure out solutions when new situations or 
problems arise with my health condition 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
I am confident that I can maintain lifestyle changes like diet and 
exercise even during times of stress 
Disagree 
Strongly 
Disagree 
Agree 
Agree 
Strongly 
N/A 
 
 
 

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15.5 
Appendix 5 Self Efficacy Survey 
SELF-EFFICACY TO PERFORM SELF-MANAGEMENT BEHAVIORS 
 
We would like to know how confident you are in doing certain activities.  For each of the following questions, please 
write the number that corresponds to your confidence that you can do the tasks regularly at the present time. 
 
1) SE Exercise Regularly 
Not at all 
Totally 
confident 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
confident 
 
How confident are you that you can… 
a. Do gentle exercises for muscle strength and flexibility three to four times per week (range of motion, using 
weights, etc.)?  _____  
b. Do an aerobic exercise such as walking, swimming, or bicycling three to four times each week?  _____ 
c. Exercise without interfering with your ostomy equipment?  _____ 
 
2) SE Get Ostomy Information 
Not at all 
Totally 
confident 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
confident 
 
How confident are you that you can… 
a. Get ostomy information from your health care system?  _____ 
b. Get ostomy information from community resources?  _____ 
c. Get ostomy information from resources on the web?  _____ 
d. Get ostomy information from a peer who has an ostomy?  _____ 
 
3) SE Obtain Help From Community, Family, and Friends 
Not at all 
Totally 
confident 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
confident 
 
How confident are you that you can… 
a. Get family and friends to help you with the things you need help with (such as household chores, 
transportation) ?  _____ 
b. Get help with the things you need help with (such as household chores, transportation) from resources 
other than friends or family, if needed?  _____ 
c. Get family and friends to help you with ostomy care?  _____ 
d. Get emotional support from friends and family (such as listening or talking over your problems) ?  _____ 
e. Get emotional support from resources other than friends or family, if needed?  _____ 
 
4) SE Communicate with Physician 
Not at all 
Totally 
confident 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
confident 
 
How confident are you that you can… 
a. Ask your health care providers things about your ostomy concerns?  _____ 

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b. Discuss openly with your health care providers any personal problems that may be related to your ostomy 
or surgery?  _____ 
c. Work out differences with your health care providers when they arise?  _____ 
 
5) SE to Manage Disease in General 
Not at all 
Totally 
confident 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
confident 
 
How confident are you that you can… 
a. Having an illness often means doing different tasks and activities to manage your ostomy.  How confident 
are you that you can do all the things necessary to manage your ostomy on a regular basis?  _____ 
b. Judge when the changes in your condition mean you should visit a health care provider?  _____ 
c. Do the different tasks and activities needed to manage your ostomy so as to reduce your need to see a 
health care provider?  _____ 
d. Reduce the emotional distress caused by your ostomy so that it does not affect your everyday life? 
e. Manage your ostomy care?  _____? 
 
6) SE Social/Recreational Activities 
Not at all 
Totally 
confident 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
confident 
 
How confident are you that you can… 
a. Continue to do your hobbies and recreation?  _____ 
b. Continue to do the things you like to do with friends and family (such as social visits and recreation)?  _____ 
c. Travel distances from your home (if you desire)?  _____ 
 
7) SE Manage Ostomy Symptoms 
Not at all 
Totally 
confident 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
confident 
 
How confident are you that you can… 
a. Reduce your physical discomfort or pain?  _____ 
b. Keep the leakage from interfering with the things you want to do?  _____ 
c. Keep the gas from interfering with the things you want to do?  _____ 
d. Keep any odor you have from interfering with the things you want to do?  _____ 
e. Maintain the integrity of your skin (prevent skin breakdown) ?  _____ 
f. Control any other ostomy-related problems you have so that they don’t interfere with the things you want 
to do?  _____ 
 
8) SE Control/Manage Depression 
Not at all 
Totally 
confident 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
confident 
 
How confident are you that you can… 
a. Keep from getting discouraged when nothing you do seems to make any difference?  _____ 

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b. Keep from feeling sad or down in the dumps?  _____ 
c. Keep yourself from feeling lonely?  _____ 
d. Do something to make yourself feel better when you are feeling lonely?  _____ 
e. Do something to make yourself feel better when you are feeling discouraged?  _____ 
f. Do something to make yourself feel better when you feel sad or down in the dumps?  _____ 
 
 
 
 

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15.6 
Appendix 6 Ostomy Knowledge Survey 
OSTOMATE KNOWLEDGE SURVEY 
 
1. It is important that one knows the specific type of ostomy he/she has because: 
 
A.  Each has its own unique management style. 
 
B.  There are different types of equipment that might be better. 
 
C.  It helps communication with an Ostomy Nurse. 
 
D.  All of the above. 
2. When using a solid skin barrier or wafer, it should be cut to fit at the base of the stoma allowing:  
 
A.  Snug with the stoma 
 
B.  1/8 inch clearance from the stoma. 
 
C.  1/2 inch clearance from the stoma. 
 
D.  It does not matter the distance from the stoma. 
 
3. If the wafer is not properly fitted 
 
A.  The stoma could be traumatized. 
 
B.  Leakage may be more likely. 
 
C.  The peristomal skin could breakdown. 
 
D.  All of the above. 
 
4. When cleansing the peristomal area, the proper method would be accomplished by using 
 
A.  Wet warm washcloth 
 
B.  Alcohol wipes 
 
C.  Baby wet wipes 
 
D.  Dial soap 
 
5. An ostomy pouching system should typically be changed 
 
A.  Whenever you have time to change. 
 
B.  Every 4-7 days. 
 
C.  Whenever there is stool in the pouch. 
 
D.  Once a week. 
  
6. An ostomy pouch should be emptied when the pouch is 
 
A.  Full 
 
B.  Half full 
 
C.  One third full 
 
D.  Every day  
 
7. Which of the following must the ostomate AVOID? 
 
A.  All sports activities 
 
B.  Sexual intimacy 
 
C.  Small children   
 
D.  All of the above. 
 
E.  None of the above. 
 

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8. Which of the following is accurate regarding the urine of a urostomate?  (Answer only if you have a urostomy 
(urinary diversion)) 
 
A.  It may contain some mucous shreds. 
 
B.  If persistent bleeding is evident, the urostomate should notify urologist or go to ER. 
 
C.  If no urine is produced in 4 hours, the urostomate should consult urologist or go to ER. 
 
D.  Urine should be transparent.   
 
E.  All of the above. 
 
9. The purpose of colostomy irrigation is (Answer only if you have a colostomy): 
 
A.  To regulate and control bowel function. 
 
B.  To keep the bowel clean. 
 
C.  To eliminates gas. 
 
D.  Decrease time spent caring for my ostomy. 
 
10. Some foods that may cause problems for the ileostomate include:   
 
A.  Corn/popcorn 
 
B.  Nuts 
 
C.  Seeds 
 
D.  All of the above.  
 
11. Regarding pouching systems: 
 
A.  One should never change pouching systems. 
 
B.  One should always change a pouching system if there are frequent leaks. 
 
C.  It is reasonable to look at new products at regular intervals. 
 
D.  Pouching systems have similar costs. 
 
E.  None of the above.  
 
 
 
 
 

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15.7 
Appendix 7a Burden of Ostomy Care Survey (full survey, baseline and followup) 
BURDEN OF OSTOMY CARE 
This study aims to collect data on the burden associated with families’ use of ostomy care and 
supplies, including ostomy-related medications, ostomy-related health care visits, travel costs to 
obtain ostomy-related care and supplies, and time spent on ostomy management tasks.  We ask that 
you please answer these questions while thinking specifically about the burden of ostomy-related 
care.  This is not a test; please give us your best estimates based on your personal experience. 
1. What kind of Ostomy do you have?   Colostomy    Ileostomy    Urostomy    Other  
2. In-person Visits with Wound and Ostomy Care Nurse in the past 4 weeks: 
a. Did you visit a Nurse in person in the past 4 weeks (at a medical office, hospital, and/or in your home)?  
No  (If NO, skip to Question 3. below.)    Yes  
b. If YES:  How many times did you visit the Nurse in the past 4 weeks?   1    2    3-4    5-8    
More than 8  
Please answer questions 2c through 2g thinking specifically about your most recent visit to the Nurse. 
c. How much do you typically pay out-of-pocket for each Nurse visit (copayments, deductibles, or other 
costs for the visit that weren’t covered by your insurance)? 
 
Nothing    $1-$10    $11-$25    $26-$50    $51-$75    $76-$100    $101+  
d. Did you have to travel to see the Nurse for your most recent visit?  No   (If NO, skip to Question 3. 
below.)    Yes  
e. How much do you typically pay out-of-pocket to get to and from each Nurse visit (such as the cost for 
taxi, bus, or parking)? $1-$5    $6-10    $11-15  $16-$25    $26-$50    $51-$100    
 $101+  
f. 
Approximately how far did you have to travel to the Nurse Visit location?  1-4 miles    5-8 mi.     
More than 8 mi.  
g. Approximately how much time did it take you to get from your home to the Nurse Visit location?   1-10 
mins  
11-30 mins     More than 30 mins  
3. Telephone and/or email consultations with a Wound and Ostomy Care Nurse in the past 4 weeks: 
a. Did you have any telephone and/or web consultations with the Nurse in the past 4 weeks?  No   (IF 
NO, skip to Question 4 below.)    Yes  
b. If YES:  How many telephone and/or web consultations have you had with  
a Wound and Ostomy Care Nurse over the past 4 weeks?    1     2    3-4     5-8     
More than 8  
Please answer Question 3c thinking specifically about your most recent telephone or web consultation 
with the Nurse. 
c. How much did you have to pay out-of-pocket for this Nurse consultation? 
 
Nothing    $1-$10    $11-$25    $26-$50    $51-$75    $76-$100    $101+  
4. In-person Visits with a Physician for stoma and/or bowel function problems in the past 4 weeks: 
a. Did you visit a Physician in person for stoma and/or bowel function problems in the past 4 weeks? 
No   (IF NO, skip to Question 5. below.)     Yes  
b. IF YES: How many times did you visit the Physician in the past 4 weeks? 
 
1     2     3-4     5-8     More than 8  

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Please answer Questions 4c through 4g thinking specifically about your most recent visit to the 
Physician. 
c. How much do you typically pay out-of-pocket for each Physician visit (copayments, deductibles, or 
other costs for the visit that weren’t covered by your insurance)?    
 
Nothing    $1-$10    $11-$25    $26-$50    $51-$75    $76-$100    $101+  
d. Did you have to travel to see the Physician for your most recent visit?  No   (If NO, skip to Question 5. 
below.)    Yes  
e. How much do you typically pay out-of-pocket to get to and from each Physician visit (such as the cost 
for 
taxi, bus, or parking)? $1-$5    $6-10    $11-15  $16-$25    $26-$50    $51-$100     
$101+  
f. 
Approximately how far did you have to travel to the Physician visit location?  1-4 miles    5-8 mi.     
More than 8 mi.  
g. Approximately how much time did it take you to get from your home 
to the Physician visit location?   1-10 mins    11-30 mins    More than 30 mins  
5. What other sources do you use to find more information about your ostomy and daily care? (Fill in 
all that apply) 
Internet     Magazines     Other people with an ostomy     Support Group      
Other (please specify)    
_______________________________________________________________________ 
6. If you wear a pouch and have encountered any problems with it, please explain below what those 
problems are/were? 
___________________________________________________________________________________ 
 
___________________________________________________________________________________ 
 
___________________________________________________________________________________ 
7. How long was it before you felt comfortable with your daily ostomy care? 
0 < 1 month     1-12 months      12+ months     I am still not comfortable  
8. On average, how long does it take to do your daily ostomy care? 
0-5 min     5-10 min     10-15 min     15-30 min     30-60min     More than 60min  
9. Do you irrigate (flush) your ostomy? 
Yes    Please answer 9a.    I used to but stopped   Please answer 9b    No   Please skip to 10. 
9a. IF YES, How often do you irrigate your ostomy?  Once a day     Every other day     Every third 
day    Other (please specify) ______________________________________________________ 
9b. If you used to irrigate but stopped, why did you stop?   Pain     Hernia     Too time 
consuming  
Other   (Please specify) __________________________________________________________ 
10. Please describe the reasons you irrigate your ostomy. (Check all that apply) 
To control timing of bowel movements      To avoid blockage     To avoid pain     Convenience     
Other   (please specify)  
11. Telephone and/or email consultations with a Physician for stoma and/or bowel function problems in 
the past 4 weeks: 
a. Did you have any telephone and/or web consultations with a Physician for stoma and/or bowel function 
problems in the past 4 weeks?   No  (IF NO, skip to Question 12. below.)    Yes  
b. IF YES:  How many telephone and/or web consultations have you had with a Physician over the past 4 
weeks?    1     2     3-4     5-8     More than 8  

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Please answer Question 11c thinking specifically about your most recent telephone or web 
consultation with the Physician. 
c. How much did you have to pay out-of-pocket for this consultation? 
Nothing     $1-$10     $11-$25     $26-$50     $51-$75     $76-$100     $101+  
12. Emergency Room visits for stoma and/or bowel function problems in the past 4 weeks: 
a. Did you have any visits to the Emergency Room for stoma and/or bowel function problems in the past 4 
weeks?   No   (IF NO, skip to Question 13. below.)    Yes  
b. IF YES:  How many times did you visit the Emergency Room for stoma and/or bowel function problems 
in the past 4 weeks?  1    2    3-4    5-8    More than 8  
Please answer Question 12c thinking specifically about your most Emergency Room visit for stoma 
and/or bowel function problems. 
c. How much did you pay out-of-pocket for your most recent ER visit (copayments, deductibles, or other 
costs for the visit that weren’t covered by your insurance))? 
$0   $1-$5    $6-10    $11-15    $16-$25    $26-$50    $51-$100    $101+  
d. How much did you pay out-of-pocket to get to and from this ER visit (such as the cost for 
taxi, bus, or parking)?  $0   $1-$5    $6-10    $11-15  $16-$25    $26-$50    $51-$100    
$101+  
e. Approximately how far did you have to travel to the ER visit location?   1-4 miles    5-8 mi.    More 
than 8 mi.  
f. 
Approximately how much time did it take you to get from your home 
to the ER visit location?  1-4 minutes    5-8 min.    More than 8 min.  
13. Urgent Care visits for stoma and/or bowel function problems in the past 4 weeks: 
a. Did you have any visits to an Urgent Care facility for stoma and/or bowel function problems in the past 
4 weeks?   No  (IF NO, skip to Question 14 below.)     Yes  
b. IF YES:  How many times did you visit an Urgent Care center for stoma and/or bowel function problems 
in the past 4 weeks?  1    2    3-4    5-8    More than 8  
Please answer questions 13c through 13f thinking specifically about your most recent Urgent Care 
visit for stoma and/or bowel function problems. 
c. How much did you pay out-of-pocket for your most recent Urgent Care visit (copayments, deductibles, 
or other costs for the visit that weren’t covered by your insurance)? 
$0    $1-$5    $6-10    $11-15    $16-$25    $26-$50    $51-$100    $101+  
d. How much did you pay out-of-pocket to get to and from the Urgent Care visit (such as the cost for 
taxi, bus, or parking)?  $0    $1-$5    $6-10    $11-15  $16-$25    $26-$50    $51-$100  
$101+  
e. Approximately how far did you have to travel to the Urgent Care visit location?   1-4 miles    5-8 mi.  
More than 8 mi.  
f. 
Approximately how much time did it take you to get from your home to the Urgent Care visit location? 
1-4 minutes    5-8 min.    More than 8 min.  
14. What type of ostomy bag system are you using?   One piece     Two piece  
15. How many of each of the following have you used over the past 4 weeks?  
a. Wafers:  10 or less     11-20     21-30     31-50     More than 50  
b. Bags:     10 or less     11-20     21-30     31-50     More than 50  
16. Medications to manage your bowel function in the past 4 weeks 

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a. Have you used any medications to manage your bowel function in the past 4 weeks? (e.g., Imodium©, 
Metamucil©, Miralax©, Loperamide)   No   (IF NO, skip to Question 16. below.)    Yes  
b. IF YES:  how many different medications have you used to manage your bowel function in the past 4 
weeks? ___ 
c. Please list up to three medications you used most frequently to manage your bowel function and the 
number of days you took these medications in a typical week: 
i. Medication _________________________  Number of days used (0 to 7) ___________________ 
ii. Medication _________________________  Number of days used (0 to 7) ___________________ 
iii. Medication _________________________  Number of days used (0 to 7) ___________________ 
17. Do you use the Eakin seal (moldable donut or ring)?    No     Yes  
18. Medications to manage – treat or prevent – skin problems around your stoma in the past 4 weeks 
a. Have you used any prescription medications to manage skin problems around your stoma in the past 4 
weeks?  (e.g., Nystatin powder).   No  (IF NO, skip to Question 18. below.)    Yes  
b. IF YES:  how many different medications have you used to manage skin problems around your stoma 
in the past 4 weeks?   None     1-2     3-4     5 or more  
c. Please list up to three medications you used most frequently to manage skin problems around your 
stoma and the number of days you took these medications in a typical week: 
i. Medication _________________________  Number of days used (0 to 7) _______________ 
ii. Medication _________________________  Number of days used (0 to 7) _______________ 
iii. Medication _________________________  Number of days used (0 to 7) _______________ 
19. How much have you spent on purchases of ostomy appliances (including wafers and bags in total 
over the past 4 weeks?   $0    $1-$25    $26-50    $51-100    $100-$150    $150-$200    
$200-$250    over $250  
20. About how many times a day do you empty your drainable ostomy bag (or discard your 
closed/disposable bag)? 
None    1-4    5-8    More than 8  
21. Over the past 4 weeks, what was the highest number of bag emptyings in a 24-hour period? 
None    1-4    5-8    More than 8  
22. Over the past 4 weeks, what was the lowest number of bag emptyings in a 24-hour period?  
None    1-4    5-8    More than 8  
23. How often do you typically discard a used bag and use a new bag? 
At every emptying     Once a day     Once every 2-3 days     Less often  
24. How much time does it usually take you to empty/dispose your bag? 
1-5 minutes     5-10 minutes     10-15 minutes     More than 15 minutes  
25. How often do you typically change your wafer on a typical week?    1     2     3      4-7     More 
than 7  
26. How much time does it usually take you to change your wafer and bag? 
1-15 minutes     16-30 minutes     30–45 minutes     45–60 minutes     More than 60 minutes  
27. Do you usually receive help caring for your stoma and changing your ostomy appliance? 
a. No    (skip to Question 27 below) 
b. Yes   IF Yes, please check who your helper(s) is(are): 
Spouse/Significant Other     Other family member     Friend     Home care nurse     Other Paid 
Caregiver     Other  (please specify) _________________________________________________ 
_________________________________________________________________________________ 

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28. Has your bag leaked at any time over the past 4 weeks? 
a. No    (skip to Question 28 below) 
b. Yes   IF YES, how many times?   1-4    5-8    More than 8  
c. How many of these times involved a full spillage of your bag contents?    1-4     5-8      
More than 8  
d. How much time does it require to clean up after a bag leak or spill?    1-30 minutes     31-60 mins.  
More than 60 mins  
29. Do you have waterproof covers on your mattress and primary chair(s)? 
a. No      Skip to Question 29 below. 
b. Yes   IF YES, how much did you spend to purchase them? 
       $0    $1-$10    $11-$25    $26-$50    $51-$75    $76-$100    $101-$150    $151+  
30. Do you have to make alterations to your clothing to accommodate your ostomy appliance? 
a. No     IF NO, skip to Question 30 below. 
b. Yes   IF YES, do you make these modifications yourself? 
i. No    
ii. Yes   IF YES, How much do you spend for these modifications? 
 
$0    $1-$5    $6-$10    $11-$15    $16-$25    $26-$50    $51-$100    $101+  
31. Do you make some or all your own clothes because you have an ostomy and nothing in the 
clothing stores will fit you appropriately? 
a. No     IF NO, skip to Question 32 below. 
b. Yes   IF YES, how much do you spend to make your own clothes in a year? 
 
$0    $1-$5    $6-$10    $11-$15    $16-$25    $26-$50    $51-$100    $101+  
32. Did you purchase any fashion accessories specifically made for someone with an Ostomy (for 
example, fashion wraps, special underwear, Stealth belt)? 
a. No     IF NO, skip to Question 33 below. 
b. Yes   IF YES, how much did you spend to purchase your special underwear/girdle/body wrap? 
 
$0    $1-$5    $6-$10    $11-$15    $16-$25    $26-$50    $51-$100     $101+  
33. Do you wear a hernia belt? 
a. No     IF NO, skip to Question 34 below. 
b. Yes   IF YES, how much did you spend to purchase your hernia belt(s)? 
 
$0    $1-$5    $6-$10    $11-$15    $16-$25    $26-$50    $51-$100     $101+  
34. How would you describe your current employment? 
Full time   
(Please select only one) 
Part time   
 
Retired and not working another job   
 
Home maker   
 
Temporarily laid off   
 
Unemployed and looking for work   
 
Unemployed and not looking for work   
 
On disability   
Other:  (please explain) ___________________________________________________________________ 
 
_____________________________________________________________________________________ 
 

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35. Do you volunteer on a regular basis?  No       Yes    IF YES, about how many hours per week did 
you spend on volunteer activities in the past four weeks?  1-4 hrs.    5-8 hrs.    9-24 hrs.    
25-40 hrs.     More than 40 hrs.  
 
FOR INTERVENTION PARTICIPANTS ONLY: 
a. Number of on-line intervention sessions participated in: 
Number:___________ 
b. Duration of on-line sessions: 
Minutes:___________ 
c. How long did it take to set up the video streaming for these sessions?  
Minutes:___________ 
d. If you already had Internet Service available to access the sessions, what is your monthly expense? 
 
$0   $1-$5    $6-10    $11-15  $16-$25    $26-$50    $51-$100    $101+  
Thank you very much for taking time to share your health care experiences! 
 
FOR FINAL SURVEY 
36. Many people have shared stories about their lives with an ostomy.  Please share with us the greatest 
challenge you have encountered in having an ostomy. 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 

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_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
_____________________________________________________________________________________ 
 
 
 
 

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15.7 
Appendix 7b Burden of Ostomy Care Survey (short survey, after session completion) 
 
BURDEN OF OSTOMY CARE:  CHECK-IN REPORT 
This study aims to collect information on families’ use of ostomy care and supplies, including ostomy-
related medications, and ostomy-related health care visits.  We ask that you please answer these 
questions while thinking specifically about your ostomy-related care.  This is not a test.  Please give 
us your best estimates based on your personal experience. 
1. In-person Visits with Wound and Ostomy Care Nurse in the past 4 weeks: 
a. Did you visit a Nurse in person in the past 4 weeks (at a medical office, hospital, and/or in your 
home)?  No  (If NO, skip to Question 3. below.)    Yes  
b. If YES:  How many times did you visit the Nurse in the past 4 weeks?    1     2     3-4  
5-8     More than 8  
2. Telephone and/or email consultations with a Wound and Ostomy Care Nurse in the past 4 
weeks: 
a. Did you have any telephone and/or web consultations with the Nurse in the past 4 weeks? 
No   (IF NO, skip to Question 4. below.)    Yes  
b. If YES:  How many telephone and/or web consultations have you had with a Wound and 
Ostomy Care Nurse over the past 4 weeks?   1     2      3-4      5-8      More than 8  
3. In-person Visits with a Physician for stoma and/or bowel function problems in the past 4 
weeks: 
a. Did you visit a Physician in person for stoma and/or bowel function problems in the past 4 
weeks?  No   (IF NO, skip to Question 5. below.)     Yes  
b. IF YES: How many times did you visit the Physician in the past 4 weeks? 
 
 
1      2      3-4      5-8      More than 8  
4. What other sources do you use to find more information about your ostomy and daily 
care? (Fill in all that apply) 
Internet      Magazines      Other people with an ostomy      Support Group   
Other (please specify)  
_____________________________________________________________________________ 
_____________________________________________________________________________ 
5. If you wear a pouch and have encountered any problems with it, please explain below what 
those problems are/were? 
_____________________________________________________________________________ 
 
_____________________________________________________________________________ 
 
_____________________________________________________________________________ 

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6. Do you feel comfortable with your daily ostomy care? Yes      No  
7. On average, how long does it take to do your daily ostomy care? 
0-5 min       5-10 min       10-15 min       15-30 min      30-60min     More than 60 min  
8. How often do you typically discard a used bag and use a new bag? 
At every emptying      Once a day      Once every 2-3 days      Less often  
9. How often do you typically change your wafer on a typical week? 
1      2      3       4-7      More than 7  
10. How much time does it usually take you to change your wafer and bag? 
1-15 minutes      16-30 minutes      30–45 minutes      45–60 minutes  
More than 60 minutes  
11. Do you usually receive help caring for your stoma and changing your ostomy appliance? 
a. No    (skip to Question 12 below) 
b. Yes   IF Yes, please check who your helper(s) is(are): 
Spouse/Significant Other      Other Family Member      Friend      Home Care Nurse   
Other Paid Caregiver      Other  (please specify:)  ________________________________ 
___________________________________________________________________________ 
12. Has your bag leaked at any time over the past 4 weeks? 
a. No     
b. Yes   IF YES, how many times?     1-4      5-8      More than 8  
i. How many of these times involved a full spillage of your bag contents? 
1-4      5-8      More than 8  
ii. How much time does it usually require to clean up after a bag leak or spill? 
1-30 minutes      31-60 mins.       More than 60 mins  
 
 
 

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15.8 
Appendix 8 Connection to Telehealth Sessions 
Please familiarize yourself with the Zoom video conferencing application before your first scheduled conference using 
Zoom. 
 
Please download and install the Zoom client before attempting to join the meeting.  For PC/MAC download the Zoom 
Client for Meetings from https://zoom.us/download#client_4meeting  .   For iOS (iPhone/iPad/iPod) 
https://itunes.apple.com/us/app/id546505307 and for Android devices: 
https://play.google.com/store/apps/details?id=us.zoom.videomeetings  
 
You do not need to create a Zoom account to join a Zoom meeting.  Only the meeting host that sends the invitation 
needs to have a Zoom account.  You can create a Zoom account if you wish, but it is not required.  
 
To test your ability to connect to Zoom at any time visit http://zoom.us/test   
 
For technical assistance connecting to Zoom, please contact the Arizona Telehealth Program (ATP) Help Desk at 520-626-
6978 or atpvcsupport@telemedicine.arizona.edu  
 
Video conferencing participants should review the following information and instructions: 
 
 
Join the video call on MM/DD and MM/DD from a quiet location with minimal background/ambient noise with 
good lighting (avoid backlighting such as with your back to a brightly lit window). Keep in mind that others on 
the video call will be able to see everything that is in your camera’s field of view. Ideally, position your camera to 
minimize any potential visual distractions, and as close to eye level as possible. 
 
Join the video call at 15-30 minutes prior to the start of the video conference session to allow time for 
troubleshooting in case of connection difficulty.   
 
Position yourself relative to your device’s camera so the camera is capturing a relatively close-up image of your 
face. Examples: 
 
    
 
  
 
Please fill in your first name only when joining the call.  This can also be done while you are on the video call by 
viewing the participant list and editing your name.  Your entry in the participant list will have (me) next to it. 
 
Look into the camera when you are speaking to give others on the call the best view of you while you are 
communicating to them. 
 
Please practice good video conference etiquette. Mute your microphone and/or camera if you need to do 
something that would be an audible or visible distraction to others. Video conferencing is similar to being in the 
same physical room meeting with people, except that sounds, such as rustling paper or bags for example, are 
much more distracting than they would be if you were meeting in person. 

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 
Keep your microphone muted by clicking / tapping on the microphone icon that appears in the lower left of the 
screen.  For PC/Mac move the mouse pointer within the Zoom video window and look for the controls that 
appear along the bottom of the window.  For tablet or smartphone, touch the screen to display the Zoom 
controls and then touch the mic icon to mute.  Repeat these actions to unmute the microphone.  Please unmute 
before speaking so that others can hear you, but mute the mic as soon as possible following your comments. 
 
                     
     
 
 
 
Only 1 device per physical room should be connected to the Zoom video conference.   2 or more participants 
using different devices in the same physical room should not connect to the same Zoom meeting ID.  Having 
more than one device on the same call in the same physical room will inevitably lead to high pitched audio 
feedback in the room and on the video call. 
 
If you lose connection or you see no change in the video image on your screen for an extended time period, you 
can leave the call by clicking “Leave Meeting” in the Zoom video window and reconnect by clicking on the 
hyperlink in the meeting invitation again.   
 
On PC/Mac, clicking on the ^ symbol along the lower left next to the microphone or camera will show a list of 
available microphones and cameras connected to your system.  Generally you won’t need to do anything here, 
but if others can’t hear you when your mic is not muted, or if you can’t hear even though you have your volume 
turned up, or others can’t see you when your video should be on, you can check here to make sure that the 
correct microphone, speakers and camera are selected for your computer. 
 
On smartphones and tablets, you will want to use the front facing camera, which should be selected by Zoom as 
the default camera.  If the rear camera is being used by Zoom for some reason, touch the screen and tap the 
camera icon to switch to the front camera. 
 
For PC/Mac/Smartphone/Tablet, you may also use a headset if you prefer instead of your device’s speakers 
and/or microphone. 
 
You need a reliable high-speed Internet connection to video conference.  Your connection should be able to 
support 1.5 megabits per second (Mbps) sustained download and upload speeds for best 
performance.  Connectivity at lower speeds is possible down to about 600 kilobits per second (.6Mbps).  At 
lower speeds motion of video images may become jerky or frozen temporarily.  WiFi or Wired Internet 
connectivity is best.  
 
It is possible to connect to Zoom via a cellular data connection through carriers such as Verizon, ATT and 
others.  VIDEO CONFERENCING USES A LOT OF DATA.  This can quickly exhaust a limited data plan from a 
wireless carrier.  1.3 gigabytes per hour is a good estimate.  For the four sessions of the OSMT program over two 
months the data plan requirement would be approximately 6 gigabytes per month plus normal monthly data 
usage. If using WiFi or wireless cellular network to connect, check your device’s signal strength indicator.  More 
bars generally means faster and more reliable connectivity. Aim for full or near full signal strength when video 
conferencing with your device.  Sometimes moving closer to a window, changing device orientation, or moving 
to another room closer to the exterior of a building can significantly impact signal strength.  You can get an 
estimate of your Internet download and upload speeds by visiting speedtest.net or using the Speedtest.net app 
and running the speedtest.   
 
 
 
 

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15.9 
Appendix 9 Group Rules 
Rules and Guidelines for Group Participation 
 
1.  Openness and respect are essential for group participation. 
 
Use first names only; raise your hand and wait to be acknowledged by the nurse leader, if you want to 
contribute to the discussion.  Every effort will be made to allow all group members to share feelings and 
experiences openly and respectfully. 
 
2.  If you will not be able to attend a session or if you make the decision to no longer attend and participate, 
notify [local Study Coordinator name], at [local contact phone #] 
 
3.  The group meeting times have been pre-established, and the nurse leader will ensure that times for beginning 
and ending the session will be followed.  The nurse leader will guide the discussion in a positive direction and 
encourage participation that includes everyone. 
 
4. Demonstration of respect for ourselves and others will be essential.  This is promoted through sharing 
feelings and experiences openly and allowing ourselves to talk about them.  We respect everyone’s right to 
discuss his/her own feelings when ready to do so. 
 
5.  Group sessions are confidential.  We are bound ethically and legally not to disclose contents of the sessions 
outside of this group.  An environment of trust and safety is essential. Do not, by any means or technology, 
photograph, video record, or audio record any portion of the OSMT Zoom video conferencing sessions.  This is 
to protect the privacy of everyone in the OSMT group 
 
6.  Disrespectful comments or disruptive behavior in the group is not acceptable.  For persistent disruptions or 
unacceptable behavior, the nurse leader will ask you to leave the group. 
 
I agree to these rules and guidelines and will attempt at all times to be a contributing and supportive member of 
the group. 
 
 
 
 

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15.10 Appendix 10 Goal Setting 
 
PATIENT GOAL SETTING FORM 
(Keep a copy for discussion in Session 1 and complete online or return this first page with initial 
surveys) 
 
Participant ID: ________________________________ 
 
 
Date: _________________ 
Intervention Nurse: ______________________ 
 
Goals for Ostomy Care and Daily Living 
 
What are three goals to help improve your daily life in the next month in the context of your 
ostomy, either related to the ostomy and ostomy care, or daily living in general, or both? 
Examples of potential goals might be:  To apply an ostomy bag so no leakage occurs; To 
explore dietary changes that will not lead to ostomy-related problems; To travel with more 
confidence in ostomy care; To participate in (special and/or routine) family 
activities/celebrations; To participate more in social activities (dining out, attending parties, 
meeting new people, enjoying music/theater/sports/hobbies/other entertainment). 
 
1. _______________________________________________________________________ 
 
2. _______________________________________________________________________ 
 
3._______________________________________________________________________ 
 
 
 

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PATIENT GOAL SETTING FORM 
(Complete online or return this after Session 2 is completed) 
 
Participant ID: ________________________________ 
 
 
Date: _________________ 
Intervention Nurse: ______________________ 
 
 
Session 1/Session 2 - Please evaluate the progress in achieving each goal from 
last session.  Use only one circle for each goal. 
 
                    Goal Achieved                   Goal Ongoing             Goal No Longer Necessary  
 
Goal 1 
Yes    No       
 
Yes    No      
           Yes    No 
Goal 2 
Yes    No              
 
Yes    No                  
Yes    No 
Goal 3 
Yes    No             
 
Yes    No                  
Yes    No 
 
List three goals for the next month.  You may include the same goals or add new 
goals. 
1. _______________________________________________________________________ 
 
2. _______________________________________________________________________ 
 
3.________________________________________________________________________ 
 
 
 
 

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PATIENT GOAL SETTING FORM 
(Complete online or return this page with other surveys after Session 4) 
 
Participant ID: ________________________________ 
 
 
Date: _________________ 
Intervention Nurse: ______________________ 
 
Session 3/Session 4 - Please evaluate the progress in achieving each goal from 
last sessions. 
 
                    Goal Achieved                   Goal Ongoing             Goal No Longer Necessary  
 
Goal 1 
Yes    No       
 
Yes    No      
           Yes   No 
Goal 2 
Yes    No              
 
Yes    No                  
Yes   No 
Goal 3 
Yes    No             
 
Yes    No                  
Yes   No 
 
List three goals for the next 6 months.  You may include the same goals from the 
previous sessions, or add new goals. 
1. _______________________________________________________________________ 
 
2. _______________________________________________________________________ 
 
3.________________________________________________________________________ 
 
 
 
 

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PATIENT GOAL SETTING FORM 
(Complete online or return this page with 6-month follow-up surveys) 
 
Participant ID: ________________________________ 
 
 
Date: _________________ 
Intervention Nurse: ______________________ 
 
Follow-up - Please evaluate the progress in achieving each goal since last sessions. 
 
                    Goal Achieved                   Goal Ongoing             Goal No Longer Necessary 
 
Goal 1 
Yes    No       
 
Yes    No      
           Yes    No 
Goal 2 
Yes    No              
 
Yes    No                  
Yes    No 
Goal 3 
Yes    No             
 
Yes    No                  
Yes    No 
Thank you for participating in this program.  
 
Comments and Suggestions -  Please list any comments or suggestions on 
favorable or unfavorable experiences with the program. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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15.11 Appendix 11 Study Form 
Study Form 
 
Participant Study ID    
 
 
 
How did you learn about this study?  
Ostomy Support Group 
 
 
 
 
 
 
 
 
Surgeon 
 
 
 
 
 
 
 
 
 
 
Other physician 
 
 
 
 
 
 
 
 
 
Ostomy Nurse (in hospital) 
 
 
 
 
 
 
 
 
Ostomy clinic (outpatient) 
 
 
 
 
Participant Age: 
 
 
 
 
 
Caregiver Age: 
 
 
 
Participant Gender: 
M 
F 
 
 
 
Caregiver Gender: 
M 
F 
 
Caregiver Relationship to ostomate: 
 
 
 
 
 
 
 
 
 
Spouse 
 
 
 
 
 
 
 
 
 
 
 
 
Partner 
 
 
 
 
 
 
 
 
 
 
 
 
Friend  
 
 
 
 
 
 
 
 
 
 
 
 
Other Family  
 
 
 
 
 
 
 
 
 
 
 
Paid Caregiver 
 
 
 
Participant Current Work Status: 
 
 
 
Caregiver Current Work Status: 
 
Working    
 
 
 
 
 
 
Working 
 
 
 
 
Retired 
 
 
 
 
 
 
 
Retired 
 
 
 
 
Homemaker 
 
 
 
 
 
 
Homemaker 
 
 
 
 
Volunteer Work 
 
 
 
 
 
Volunteer Work 
 
 
 
Participant Living Situation:  
 
 
 
Caregiver Living Situation: 
(Describe if assisted living facility) 
 
 
 
(Describe if assisted living facility) 
 
Live with caregiver 
 
 
 
 
 
Live with ostomate 
 
 
 
Live with others (besides caregiver)  
 
 
Live with others (besides caregiver)  
 
 
Live alone  
 
 
 
 
 
 
Live alone 
 
 
 
 
Participant Health Problems other than your cancer  
Caregiver Health Issues (check all that apply): 
(check all that apply): 
 
Diabetes  
 
 
 
 
 
 
Diabetes 
 
 
 

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Heart Disease  
 
 
 
 
 
Heart Disease  
 
 
 
Vision problems 
 
 
 
 
 
Vision problems 
 
 
 
Arthritis 
 
 
 
 
 
 
 
Arthritis 
 
 
 
 
Mobility problems 
 
 
 
 
 
Mobility problems 
 
 
 
Other 
 
 
 
 
 
 
 
Other  
 
 
 
 
 
 
 
 
 

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15.12 Appendix 12 Ostomy Resource Compendium 
Ostomy Resource Sheet 
City of Hope 
Ostomy Equipment Resources 
Coloplast 
1-888-726-7872 
Marlen  
1-216-292-7060 
Convatec 
1-800-422-8811 
Nu-Hope 
1-800-899-5017 
Hollister 
1-888-740-8999 
Securi-T USA 
1-877-726-4400 
Cymed  
1-800-582-0707                
 
Partial list of Ostomy Supply Distributors 
Byram HealthCare 
1-877-902-9726  
www.byramhealthcare.com 
CCS Medical 
1-800-722-2604  
https://ccsmed.com 
Edgepark Medical 
1-888-394-5375  
www.edgepark.com 
Liberator Medical 
1-866-643-0956  
www.liberatormedical.com 
Liberty Medical 
1-800-723-9558  
www.libertymedical.com 
McKesson 
1-855-404-6727               https://mpcs.mckesson.com 
Parthenon 
1-800-453-8898  
www.parthenoninc.com 
Sterling Medical 
1-888-907-8875  
www.sterlingmedical.com 
 
Online Ostomy Resources 
Ostomy Association of Los Angeles: The Ostomy Association of Los Angeles (OALA) is a non-profit, volunteer-based 
support association dedicated to improving the quality of life of anyone who has or will have an intestinal or urinary 
diversion. 
 
http://www.oa-la.com/ 
 
818-337-8476 
 
Need a membership; $25 annual fee 
United Ostomy Associates of America, Inc.: United Ostomy Associations of America is the place for ostomy resources, 
advocacy, and support. UOAA is over 300 Affiliated Support Groups strong, and is here to help you get the answers you 
need as you begin your “new normal” life. We invite you to explore our website to find information about ostomies. 
You’ll find answers about nutrition and intimacy, and useful knowledge about living with an ostomy or continent 
diversion. 
 
http://www.ostomy.org/Home.html 

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 
1-800-826-0826 
Inspire-Together we’re better: Inspire was created with the belief that patients and caregivers need a safe and secure 
place to support and connect with one another.  Inspire was created because: We all need a safe place to discuss health. 
We can help each other. Together, we are better. 
 
 
https://www.inspire.com/about/ 
o Create an account for free 
 
1-800-945-0381 
Ostomy Land: An online ostomy support group; offering ostomy and stoma management and a community of people 
just like you. 
 
http://www.ostomyland.com/ostomyland/ 
o Create an account for free 
 
COH Contact List and Resources 
Ostomy RN:   Leddy Hoffman     626-218-0860     lhoffman@coh.org 
Sheri & Les Biller Patient and Family Resource Center: The Biller Patient and Family Resource Center integrates all 
support services at City of Hope. Here you can explore the many resources we offer to strengthen and empower 
patients and caregivers before, during, and after treatment. 
 
http://www.cityofhope.org/patients/for-patients-and-visitors/biller-resource-center 
 
626-218-CARE (2273) 
Nutritionist and Physical Therapy: These resources are available at City of Hope, please contact your physician or nurse 
so that a referral can be made for you. 
 
Outpatient Ostomy Clinics 
 
Huntington Hospital- Pasadena, CA 
o http://www.huntingtonhospital.com/Main/OstomyClinic.aspx 
o 626-397-5711 
 
Memorial Care Health System-Long Beach, CA 
o http://www.memorialcare.org/long-beach-memorial/locations/wound-ostomy-continence-nursing-
service-outpatient-long-beach-2888 
o 562-933-3136 
 
Enloe Medical Center: Wound/Ostomy & Hyperbaric Center-Chico, CA 
o Referral needed-form online 
o http://www.enloe.org/services-and-treatments/woundostomy-hyperbaric-center/woundostomy-
services 
o 530-332-7144 
Ostomy Class 

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 
UC Irvine Health-Irvine, CA 
o Free class-informative, interactive  
o Offered monthly for patients and families 
o http://www.ucirvinehealth.org/events/health-classes/ostomy/ 
 
Smoking Cessation 
 
California Smoker Helpline 
o http://www.nobutts.org/ 
o 1-800-NO-BUTTS (1-800-662-8887) 
 
City of Hope 
o Free Smoking Cessation Support Group 
 
City of Hope- Sheri & Les Biller Patient and Family Resource Center 
 
Every Monday at 3pm 
o Nicotine Anonymous Meeting 
 
City of Hope-Needleman Bldg., Rm 101 (Next to Fountain) 
 
Every Tuesday at 6:30pm 
o Contact: Sophia Yeung 
 
626-218-9114 
 
626-253-3983 
 
syeung@coh.org 
 
 

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Ostomy Resource Sheet 
Penn Medicine - Philadelphia 
 
Hospital of the University of PA (HUP) Ostomy Nurse Specialist Contact Info 
 
HUP Ostomy Nurse Office 
215-662-6163 
HUP Ostomy Clinic   
215-662-2078 
 
Ostomy Manufacturer Information 
 
Hollister 
 
 
1-888-740-8999 
www.hollister.com 
Coloplast 
 
 
1-888-726-7872 
www.coloplast.us 
Convatec 
 
 
1-800-422-8811 
www.convatec.com 
Cymed  
 
 
1-800-582-0707          www.cymed.us 
Nu-Hope Labs 
 
1-800-899-5017 
www.nu-hopelabs.com 
Securi-T USA  
 
1-877-726-4400 
www.securitusa.com 
 
Ostomy Supply Distributors (Partial list; Most commonly used distributors listed first) 
 
McKesson 
1-855-404-6727 
https://mpcs.mckesson.com 
Edgepark Medical 
1-888-394-5375 
www.edgepark.com 
Byram HealthCare 
1-877-902-9726 
www.byramhealthcare.com 
CCS Medical 
1-800-722-2604 
https://ccsmed.com 
Flagship Medical 
1-800-344-6472 
www.flagshipmedical.com 
Liberty Medical 
1-800-379-9617 
www.libertymedical.com 
Parthenon 
1-800-453-8898 
www.parthenoninc.com 
 
United Ostomy Association Support (UOA) Groups 
 
http://www.ostomy.org/Find_a_Support_Group.html 
 
Local Ostomy Support Groups 
 
Philadelphia, PA 
 
Stanley Cooper 
 
215-487-2584 
Riddle Hosp. Media, PA 
Dee Foster, CWOCN  
484-227-4273 
Lower Bucks County, PA 
Dennis Hickey 
 
215-638-3297 
Woodbury, NJ  
 
Kathy Pfleger  
 
856-845-0100 X 6420 
 
Ostomy Accessory Websites 
 
Ostomy Secrets 
 
1-877-613-6246 
www.ostomysecrets.com 
Stealth belt 
 
 
1-800-237-4491 
www.stealthbelt.com 
 

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General Cancer Support Services at Penn Medicine’s Perelman Center 
Type https://www.pennmedicine.org/cancer into you internet browser.  Click on “Navigating cancer care” and 
then click on “Support services.”  The services at Penn Medicine are listed below. 
 Counseling for patients and families (Psychosocial Counseling Program) 
 Faith and Hope Boutique 
 Home Care Services (infusion therapy) 
 Hospice 
 Nutrition Counseling- 215-615-0534 
 Palliative Care and Pain Management 
 Patient Education 
 Patient Navigators 
 Stress Management 
 Support Groups Penn Program for Mindfulness 
 
 
 
 

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Ostomy Resource Sheet 
Yale University 
Ostomy Equipment Resources 
Coloplast 
1-888-726-7872 
Marlen  
1-216-292-7060 
Convatec 
1-800-422-8811 
Nu-Hope 
1-800-899-5017 
Hollister 
1-888-740-8999 
Securi-T USA 
1-877-726-4400 
Cymed  
1-800-582-0707                
 
Partial list of Ostomy Supply Distributors 
Byram HealthCare 
1-877-902-9726  
www.byramhealthcare.com 
CCS Medical 
1-800-722-2604  
https://ccsmed.com 
Edgepark Medical 
1-888-394-5375  
www.edgepark.com 
Liberator Medical 
1-866-643-0956  
www.liberatormedical.com 
Liberty Medical 
1-800-723-9558  
www.libertymedical.com 
McKesson 
1-855-404-6727               https://mpcs.mckesson.com 
Parthenon 
1-800-453-8898  
www.parthenoninc.com 
Sterling Medical 
1-888-907-8875  
www.sterlingmedical.com 
 
 
United Ostomy Associates of America, Inc.: United Ostomy Associations of America is the place for ostomy resources, 
advocacy, and support. UOAA is over 300 Affiliated Support Groups strong, and is here to help you get the answers you 
need as you begin your “new normal” life. We invite you to explore our website to find information about ostomies. 
You’ll find answers about nutrition and intimacy, and useful knowledge about living with an ostomy or continent 
diversion. 
 
http://www.ostomy.org/Home.html 
 
1-800-826-0826 
 
 
 
Online Ostomy Resources cont. 

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Inspire-Together we’re better: Inspire was created with the belief that patients and caregivers need a safe and secure 
place to support and connect with one another.  Inspire was created because: We all need a safe place to discuss health. 
We can help each other. Together, we are better. 
 
 
https://www.inspire.com/about/ 
o Create an account for free 
 
1-800-945-0381 
Ostomy Land: An online ostomy support group; offering ostomy and stoma management and a community of people 
just like you. 
 
http://www.ostomyland.com/ostomyland/ 
o Create an account for free 
Ostomy Secrets 
 
1-877-613-6246 
www.ostomysecrets.com 
 
Osto Group LLC 
www.ostogroup.org   877 678 6690 
Ostomy products for the uninsured  
 
Connecticut Ostomy Clinics 
Yale New Haven Hospital out-patient Ostomy Clinic 
www.yalecancercenter.org  
Smilow Cancer Center 
35 Park Street, 8th floor 
New Haven CT, 06520 
  203 200 4422 for appointments 
  203 737 2634 Lucinda Pinchot, WOCN Ostomy Nurse 
 
Lawrence and Memorial Hospital 
Waterford, CT 
 860 271 4949 for appointments 
Bridget Mejza WOCN 
http://www.lmhospital.org/services/wound-and-hyperbaric.aspx  
 
 

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15.13 Appendix 13 Telehealth Equipment Loan Agreement 
USE AGREEMENT 
For the Use of Telehealth Connection Equipment for Study Purposes 
 
 
This Agreement is entered into between the [Name of Site] and 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Whereas User wishes to obtain the temporary use of the Equipment for the following purpose(s): 
 
Connection to Telehealth Ostomy Care sessions 
 
 
at the following address: 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
User has permission for the temporary use of Equipment (Make, Model, Serial #) _______________ 
 
 
 
 
 
 
 
 
 
 
 
  
from   
 
 
 
 to  
 
 
 
 
 
 under the following 
conditions: 
 
1. User shall be responsible for the security and care of Equipment. 
2. The User agrees to exercise due care in the use of said Equipment and at the termination of the 
Agreement to return the Equipment in as good condition as at the commencement of the Agreement and 
to be responsible for said equipment while it is in their possession.  
3. User is responsible for their use of network communications during the time the tablet or mobile hotspot is 
in their possession. 
 
User shall not sublet or lend or dispose of the Equipment, or permit it to be used by anyone other than User. 
 
[Name of Site] 
 
 
 
 
 
USER: 
 
 
 
 
 
 
 
 
 
By: 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Print Name: 
 
 
 
 
 
 
 
 
 
 
 
 
 
Date:  
 
 
 
 
 
 
Date:  
 
 
 
 
 
 
 
Equipment returned Date: