Social Networks and Renal Education: Promoting Transplantation
Phase: NA
Conditions: End Stage Renal Disease, Living Donor Kidney Transplantation, Renal Dialysis
Sponsor: Temple University

 
 
Cover Page 
 
Official Protocol Title: Social Network Analysis and Renal Education to Promote 
Transplantation (SNARE Transplant)  
 
Protocol for Social and Behavioral Protocol 
 
Investigator: Avrum Gillespie M.D. 
 
Document Last Edited: 4/3/2017  
 
Approved by: Temple University Institutional Review Board 
Protocol Number:  11648 
Initial approval: 4/10/2017 
Renewal approval: 4/9/2018 
 

Abstract of the Study:  Barriers to kidney transplantation exist among patients with 
ESRD on hemodialysis.  The aim of this study is to use survey research to understand 
attitudes towards hemodialysis and kidney transplantation to identify barriers to living 
donor kidney transplantation among hemodialysis patients.  The Dialysis Patient 
Transplant Questionnaire, or DPTQ, was designed to identify barriers to transplantation 
in a large urban, predominantly African American population of hemodialysis patients by 
surveying their perceptions of their health and quality of life, the availability of social and 
emotional support, and their experiences and attitudes regarding dialysis and kidney 
transplantation. Based on the preliminary results The major concerns were for the donor, 
asking for a kidney and their own health. These concerns are amenable to the COACH 
intervention. These studies focused on a poor and underserved black population, limiting 
their generalizability.  Patients also rely on the hemodialysis clinic social networks for 
information regarding kidney transplantation.  . We believe that hemodialysis social 
networks facilitate the spread of information and behaviors, and that using a targeted 
social network intervention will improve access to transplantation especially among 
women and minorities.  Furthermore, patients subjective health will be correlated with 
objective measures obtained from patients medical record.   
 
1) Protocol Title: Social Network Analysis and Renal Education to Promote 
Transplantation (SNARE Transplant) formerly: Survey of Dialysis Patients 
Regarding Their Views on Renal Transplantation 
 
2) Investigator: Avrum Gillespie M.D. 
 
3) Objectives: The aim of this study is to use survey research and the COACH 
(Communicating about Choices in Transplantation) to understand attitudes 
towards hemodialysis and kidney transplantation among hemodialysis patients 
and how the social networks do they form affect the diffusion of knowledge, 
attitudes, and behaviors towards transplantation.  Lastly, patients subjective health 
will be correlated with objective measures obtained from patients medical record, 
to better understand patients health outcomes among hemodialysis patients. 
 
4) Rationale & Significance: For patients with end stage renal disease, kidney 
transplant has been shown to have better outcomes than maintenance dialysis.  A 
comparison of patients on the transplant waiting list those who eventually 
undergo transplantation have better long-term survival than those who do not get 
a transplant.1,2 In the United States African Americans have lower rates of renal 
transplant than whites,3 including living donor transplants. Previous studies have 
suggested that possible barriers to cadaveric donation include: denial of the need 
for transplantation, religion, fear of surgery, access to care, distrust of the medical 
system, less access to care, poor education, and racism.4-7  Barriers to living 
donation in African Americans have not been as well studied.  The Dialysis 
Patient Transplant Questionnaire, or DPTQ, was designed to identify barriers to 
transplantation in a large urban, predominantly African American population of 
hemodialysis patients by surveying their perceptions of their health and quality of 
life, the availability of social and emotional support, and their experiences and 

attitudes regarding dialysis and kidney transplantation. The questionnaire assesses 
three areas of interest; (1) demographic characteristics and the availability of 
social and emotional support; (2) self- reported health, quality of life, and the 
specific impact of kidney disease and its treatment; and (3) patient views of 
kidney transplantation, including self-reported listing status and perceived bias in 
transplantation allocation.  (4) who patients talk to in the hemodialysis clinic, 
what they talk about and how often.  Many of the items included in the DPTQ 
have been validated in hemodialysis and transplant populations 8-15 including 
quality of life measures and independent predictors of mortality.  Previous 
research has speculated that the social networks that patients form in the 
hemodialysis clinc may influence attititudes and behaviors towards transplant and 
may be amenable to social network interventions.  Social network behavioral 
interventions in other fields16-21  have found that it may be better to target dense 
(clustered) networks than diffuse networks.  As diffuse networks function as 
discussion networks and can be more effective in changing behavior than diffuse 
networks which function as advice networks and are better at spreading novel 
information through a central person19-21.  Once patients social networks have 
been mapped, we will assign every HD clinic shift to one of the two targeting 
strategies based on social network attributes for the COACH intervention.  We 
will measure the spread of information, attitudes, and behaviors by comparing the 
targeted patients to those that they refer, as well as the other patients on their shift.  
The COACH was specifically designed to educate patients on kidney disease and 
communication skills to approach other people about potential donation.  
 
5) Resources and Setting:  All participants collecting and entering data will be IRB 
and HIPAA trained.  All data will be stored on a HIPPA secure, password/firewall 
protected computer in an office that is locked.  Once the data has been collected it 
will be de-identified for analysis. The participating facilities are medical clinics 
with standard HIPPA policies.  The following facilities are: DCI Philadelphia 
3300 Henry Ave. Philadelphia, PA 19129 DCI North Brunswick 105 North 
Center Drive, North Brunswick, NJ 08902.  Patients are no longer going to be 
enrolled at the following sites: Fresenius Dialysis/Temple Joint Venture 3401 Fox 
Street Philadelphia, PA 19129, Fresenius Dialysis/Temple Joint Venture Port 
Richmond, 2301 East Allegheny Avenue Philadelphia, PA 19134, Temple 
Abdominal Organ Transplant Clinic 3509 N. Broad Street Philadelphia, PA 
19140, however data collection and analysis is ongoing. 
 
6) Prior Approvals: Approval has been granted by the medical directors of all of 
the aforementioned facilities. 
 
7) Study Design: 
 
a. Recruitment methods: Convenience sample of English speaking patients 
greater than 18 years old while receiving hemodialysis for ESRD, who are 
able to give consent.  This population is over 500 patients.  Patients will be 
approached by a survey researcher while getting their hemodialysis 

treatment.  There are will be ten dollar gift card as  compensation for 
participating in the survey.  There will be no advertisement for the study.    
 
b. Inclusion/Exclusion Criteria:  All patients over the age of 18 who are 
receiving hemodialysis for ESRD are eligible to participate in the initial 
survey.  Patients will be excluded if they are under the age of 18, or unable 
to consent for other reasons (i.e. dementia).  Only transplant eligible 
patients may participate in the COACH intervention. Patients who have 
not been referred for kidney transplantation will be evaluated for 
transplant eligibility via chart review by a study transplant nephrologist for 
transplant candidacy.  If the patient is eligible for transplant but not 
referred, the transplant nephrologist will discuss with the primary 
nephrologist if the participant is an appropriate candidate and reasons they 
have not been referred.  We will defer the transplant referral to the 
attending nephrologist. Our major exclusion criteria are nursing home 
resident, >79 years of age, active or recent malignancy, inoperable 
coronary artery disease, or comorbid illness that will make it unlikely that 
the patient will survive >3 years after transplant. 
 
c. Study Timelines:  The proposed research combines both a longitudinal 
observational cohort study to examine the structure of HD clinic social 
networks and a targeted transplant education intervention (COACH) trial 
to test the role of the network in the dissemination of knowledge, attitude, 
and behaviors with the overall goal of improving access to kidney 
transplantation.data will be analyzed yearly and modifications and 
interventions will be made accordingly. 
 
d. Study Procedure and Data Analysis:  
 
i. After consent has been obtained the patient will be given a baseline 
survey.  This survey will then be repeated annually for the next 2 
years. Three surveys in total.  If the patient is chosen for the 
COACH intervention (see sections d.iii-v), they will also receive 
an additional survey post-intervention. The patient has the option 
of completing the survey themselves or completing it with a 
trained survey researcher.  Clinic staff will also participate in a 
modified version of the survey to assess their attitudes towards HD and 
kidney transplantation. 
 
ii. In addition to surveys, the clinic staff will be trained to observe 
which patients talk with whom, as well as, the frequency and 
approximate duration of the conversation.  The staff will be 
instructed to continue to assign seating based on clinical necessity 
and patient preference.  Research staff, while they are performing 
the surveys or the COACH intervention, will also make and record 
observed patient interactions. Furthermore seating assignments 

will also be collected.  This data will be coded, patients will be de-
identified for the analysis. 
 
iii. COACH is a behavioral communication intervention designed 
specifically for ESRD patients pursuing kidney transplantation. 
The COACH program (appendix) consists of four modules: 1) 
Kidney transplant options, 2) Discussing your transplant options, 
3) Requesting living donation, and 4) Maintaining positive 
relationships.  The content and teaching strategies were guided by 
the concepts of social cognitive theory as well as principles of 
adult learning and communication skills22-25.  Another study 
coordinator will conduct the intervention in four, face to face, one 
hour sessions in the HD clinic.  Patients will receive the 
accompanying handbook and video for the COACH intervention. 
 
iv. Using the data collected from the original survey and social 
network analysis, we will randomly select one transplant eligible 
patient (based on network attribute (most-clustered or most-
central) per shift to participate in the COACH intervention.  
 
v. We propose a pre-post design to assess the impact of the COACH 
education on patients’ transplant-related knowledge and behaviors. 
Before administering the COACH education, we will survey 
targeted patients to assess changes in knowledge and behaviors 
towards transplant from the baseline survey.  As another measure 
of the impact of the COACH intervention, patients not receiving 
the intervention will serve as controls and will be surveyed along 
with those receiving the intervention; we will then assess within 
and between group differences in transplant-related knowledge and 
behaviors. To assess the dissemination of information contained in 
the COACH intervention, all patients will be surveyed at 3-months 
post-intervention. The follow-up surveys will determine the 
sources of these changes (eg. self-reading after the survey, the 
COACH intervention, or discussing with other patients).  Finally, 
during Year 4, one year post-intervention, a final survey will be 
administered to the all the patients in both clinics to assess 
retention of information and change in attitudes and behaviors of 
those who participated in COACH and the spread of information 
and behaviors to the patients who were not targeted. 
 
vi. The medical information collected is age, insurance status, ESRD 
diagnosis, vascular access.  Medical comorbidities: congestive 
heart failure, peripheral vascular disease, malignancy.  Mental 
Health, Substance Abuse, and HIV information is not collected.  If 
the patient has ESRD from HIV the diagnosis is coded as 
glomerulonephritis a common and non-specific cause of ESRD. 

Phosphate binding medication, Vitamin-D, and Calcimetic 
prescribing information is collected.  Laboratory data includes 
basic metabolic panel, phosphorus, cbc, iron studies, hepatic 
function, cholesterol.  Data collected will be analyzed to better 
understand barrriers to transplantation and compare self-reported 
(survey) health data to laboratory data.  All data is entered in an 
Excel spreadsheet and analyzed in SPSS 17.0, using descriptive 
statistics, chi-square test of association and t-tests.  Time series 
analysis will be done in MathWorks MATLAB software.  A p-
value of less than 0.05 will be deemed significant. 
 
e. Withdrawl of Subjects:  Patients may withdraw at anytime, this will be 
as a result of the patient transferring out of the clinic.  Once, the patient 
withdraws they can contact the survey researcher or the PI and data will 
stop being collected. 
 
f. Privacy & Confidentiality: All documents and information pertaining to 
this research study will be kept confidential in accordance with applicable, 
federal, state, and local laws and regulations. If any data is published the 
patient will not be identified by name. All participants collecting and 
entering data will be IRB and HIPAA trained.  All data will be stored on a 
HIPAA secure, password/firewall protected computer in an office that is 
locked.  Paper records will be kept in a locked file cabinet in a locked 
office.  Once the data has been collected it will be de-identified for 
analysis. The participating facilities are medical clinics with standard 
HIPAA policies.  The survey is anonymous, and the patients’ individual 
response will not be shared with the treating physician or staff.  Patients 
will also sign a HIPAA secure discussing protected health information.  
Personal health information will be deleted 5 years after the completion of 
the study. 
 
8) Risks to Subjects: There are no invasive procedures involved with this study, 
however, patients are given 24 hour contact information for the study coordinator 
as well as the study director if the feel they have experienced any adverse events 
or have any further questions.  The COACH intervention was specifically 
designed to minimize the stress associated with asking for a living donor kidney 
transplant.  The  patients’ individual response will not be shared with the treating 
physician or staff.  As we are performing a social network study we will not 
disclose to other patients whether they have been identified in another patients 
social network, nor other patients transplant eligibility.  Furthermore, the subjects’ 
surveys are identified by study ID number and not by name.  All data is kept on 
firewall protected HIPAA compliant computer in an office that is locked when not 
in use. 
 

9) Potential Benefits: There are no immediate benefits, however, the benefit of this 
study is to better identify barriers to kidney transplantation and help create am 
intervention to decrease the disparities in kidney transplantation. 
 
10) Costs to Subjects: None 
 
11) Informed Consent: Consent will be obtained while the patients are receiving 
hemodialysis treatments in the clinic.  Before patients are consented, they clearly 
told both verbally in and in writing that consent is voluntary and would not affect 
their treatment.  Patients can have up to an hour to decide whether to participate at 
which time they can discuss any questions regarding the study. Before patients 
sign the consent form they would be asked to repeat back the consent. Patients 
will be given a copy of the consent and are free to ask questions in person or via 
phone. For Spanish speaking patients, the consent and survey will be administered 
via Spanish interpreter or language line. 
 
12) Vulnerable Populations: Vulnerable populations will be excluded from the 
study. 
 
 
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