Huntsman Intermountain Adolescent and Young Adult Cancer Care Program- Cancer Health Insurance Tool Study
Phase: NA
Conditions: Adolescent, Young Adult, Cancer
Sponsor: University of Utah

Clinical Development 
00127029 
Clinical Trial Protocol ID:  IRB_00127029 / NCT04448678 
 
Huntsman Intermountain Adolescent and Young Adult Cancer Care Program - 
Cancer Health insurAnce Tools Study (HIAYA CHAT Study) 
 
Principal or Coordinating Investigator: Anne Kirchhoff 
Site Name 
Investigator 
Staff Name(s) 
Intermountain Primary Children's Hospital  
Anne Kirchhoff 
Amy Chevrier 
John Anderson 
Perla Vaca Lopez 
Austin Waters 
Karely van Thiel Berghuijs 
University of Utah 
Anne Kirchhoff 
Monique Stefanou 
Amy Chevrier 
John Anderson 
Heydon Kaddas 
Benjamin Haaland 
Cynthia Turner 
Austin Waters 
Karely van Thiel Berghuijs 
Douglas Fair 
Echo Warner 
 
 
 
  
 
Document type: Draft Protocol Summary 
Version number: v4 

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Release date: March 2, 2020 
 
Table of Contents 
Clinical Development .............................................................................................................. 1 
Protocol Synopsis .................................................................................................................... 4 
Amendment 4 ......................................................................................................................... 6 
Amendment 3 ......................................................................................................................... 6 
Amendment 2 ......................................................................................................................... 6 
Amendment 1 ......................................................................................................................... 6 
1. Background and Introduction .............................................................................................. 7 
2. Purpose and Objectives ....................................................................................................... 8 
3. Study Population ................................................................................................................. 9 
3.1 Inclusion Criteria: ....................................................................................................................... 9 
3.2 Exclusion Criteria: ....................................................................................................................... 9 
4. Study design ...................................................................................................................... 10 
5. Study Procedures .............................................................................................................. 10 
5.1 Recruitment/Participant Identification Process ........................................................................ 10 
5.1.1 Enrollment Goals ...................................................................................................................................... 10 
5.1.2. Process ..................................................................................................................................................... 10 
5.2 Informed Consent ..................................................................................................................... 10 
5.3 Study duration ......................................................................................................................... 11 
5.4 Randomization ......................................................................................................................... 11 
5.5 Procedures ............................................................................................................................... 11 
6. Data Collection .................................................................................................................. 13 
7. Risks and Benefits ............................................................................................................. 13 
8. Cost and Compensation ..................................................................................................... 14 
9. Statistical Methods, Data Analysis and Interpretation ....................................................... 14 
9.1  Aim 2 ....................................................................................................................................... 14 
9.2 Aim 3 ........................................................................................................................................ 15 
Appendix A ........................................................................................................................... 16 

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References ............................................................................................................................ 19 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

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Protocol Synopsis 
Protocol number 
 00127029 
Title 
Huntsman Intermountain Adolescent and Young Adult Cancer 
Care Program - Cancer Health insurAnce Tools Study (HIAYA CHAT 
Study) 
Sponsor and Clinical Phase 
NIH NATIONAL CANCER INSTITUTE, Federal Government, 11259 
Study type  
Interventional 
Primary Objective(s)  
In this study, we are adapting and testing educational modules to 
improve AYA cancer patients' knowledge of insurance and costs 
Study design 
Non-Experimental and/or Descriptive Research Design: 
Interviews and Focus Groups 
Survey/Questionnaire Research 
Experimental and/or Interventional Research Design: 
Randomized Trial 
Population 
Cancer patients between ages 18 and 40. Sites include University 
of Utah and Intermountain Primary Children's Hospital. Sample 
size of 120. 
Inclusion criteria 
Aim 2: 
1. Are currently a cancer patient and within 1 year of their 
diagnosis and actively receiving 
chemotherapy, surgery, radiation, and/or hormonal therapy 
2. Are a patient at Primary Children’s Hospital, Intermountain 
Medical Center, or Huntsman 
Cancer Institute 
3. Were between the ages of 17 and 39 years old when diagnosed 
with their first primary 
cancer and are currently aged 18 – 40 years old 
4. Speak English 
Aim 3: 
1. From participants in both the control group and intervention 
group, 20 participants will be invited 
to participate in an exit interview. 
Exclusion criteria 
Aim 2 & 3: 
1. Are unable to participate due to developmental delay 
2. Do not read or understand English comfortably 
3. Do not have access to an electronic device with video 
conferencing capability (e.g., 
smartphone, laptop, etc.). 
3. Currently do not have health insurance coverage 

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Data analysis 
We will use descriptive statistics to report on the following 
endpoints: intervention feasibility (e.g., percent of AYA cancer 
patients enrolled), acceptability (e.g., satisfaction) and efficacy 
(e.g., health insurance literacy, cost-related literacy, provider 
communication about cost, financial toxicity). We will run 
descriptive statistics to examine group differences at baseline; any 
imbalanced covariates will be included as adjustment variables. 
We will use chi-squared and independent sample t-tests to 
compare end-of-treatment changes in preliminary efficacy 
outcomes between the two groups. 
 
 
 
 
 

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Amendment 4 
The consent form included a section that stated a health insurance education booklet would be 
mailed to participants, however our study design does not include sending this booklet. The 
consent was updated to remove this language.  
• 
The consent form was updated to reflect this change 
Amendment 3 
Recruitment materials will now be shared by Huntsman Cancer Institute social media as well as a HIAYA 
CHAT specific study social media. 
• 
Section 5.1.2 was amended to reflect this change 
Amendment 2 
In addition to being emailed and called by study staff, they may receive text messages to ask if they are 
interested in participating in our study. 
• 
Section 5.1.2 was amended to reflect this change 
Amendment 1 
Updated consent options, so participants will be able to easily consent to the study on their smart 
device or computer during all times of the day through REDcap. If participants have questions about the 
consent, we will publish our email addresses and phone numbers so they can contact us without delay. 
Nothing within the consent language will be altered, we simply want to add another method of consent.  
• 
Section 5.2 was amended to reflect this change 
 
 
 
 
 
 
 
 
 
 

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1. Background and Introduction  
Cancer patients in the United States often experience substantial distress about out-of-pocket costs 
from their cancer treatment that are not covered by their health insurance.1-4 In 2013, the Institute of 
Medicine recommended efforts to improve cancer patients’ understanding of cancer care costs as part 
of providing high-quality cancer care.5 Adolescents and young adults (AYAs) diagnosed with cancer ages 
15-39 are often underinsured – that is, even with insurance they face high out-of-pocket costs or have 
unmet health care needs due to costs.6-8 In one study from our team, 20% of insured AYAs with cancer in 
a national sample reported skipping care due to costs in the past year compared to 10% of insured 
cancer-free controls.8 Also, AYA cancer patients experience more gaps in their insurance coverage than 
older individuals with cancer. 9,10 As such, medical costs have substantial effects on AYA cancer patients 
as they are more likely to borrow money, go into debt,1 and file for bankruptcy after a cancer diagnosis11 
than patients diagnosed at older ages.  
Health insurance literacy is defined as a patient’s ability to make informed decisions about choosing and 
using health insurance.12 Cost-related literacy is a related concept that is defined as how well a patient 
understands financial concepts specific to cancer care and their comfort discussing financial burden with 
providers.10,13 Our studies of AYA cancer patients demonstrate that they feel uninformed about their 
insurance and want to have cost conversations with providers, but feel uncomfortable doing so.14 This is 
not surprising as AYA cancer patients tend to be healthy prior to diagnosis and therefore have little 
experience with the health care system and insurance.15 At the same time, the Affordable Care Act 
(ACA) has expanded opportunities for AYA cancer patients to obtain insurance coverage,16-18 but our 
studies demonstrate AYAs’ low understanding of the ACA’s provisions.19,20 Under the ACA, many young 
adults with cancer are now insured through age 26 on their parents’ insurance, whereas those over age 
26 have not made the same insurance coverage gains.17 However, our research demonstrates that 
regardless of age and insurance status, AYAs with cancer are worried about insurance and costs and 
want education on these issues.14 
 
 

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2. Purpose and Objectives 
In this study, we are adapting and testing educational modules to improve AYA cancer patients' 
knowledge of insurance and costs.  
Aim 2: Conduct a telemedicine-based pilot randomized controlled trial (RCT) of the health insurance 
education program (HIEP) among AYA cancer patients.  
• 
Hypotheses: Among AYA cancer patients, the HIEP will be feasible and acceptable and improve 
their health insurance literacy and cost-related literacy compared to usual care. 
• 
Intervention: Pre-intervention and post-intervention surveys will assess insurance literacy and 
cost literacy. The intervention will be comprised of four, 30 to 45-minute HIEP sessions which 
will be delivered by HIAYA Patient Navigators over the intervention period. 
• 
Aim 2a: Determine (1) The feasibility (number of eligible enrolled/sessions completed) and (2) 
the acceptability (and/or satisfaction) of conducting a telemedicine-based HIEP with AYA cancer 
patients.  
• 
Aim 2b: Assess the efficacy of the HIEP to improve AYAs’ health insurance literacy and cost-
related literacy.  
Aim 3: Evaluate and refine the HIEP for dissemination in a larger RCT.  
Conduct interviews with a selected subset of HIEP control and intervention arm participants, to 
understand AYA’s (1) Satisfaction with usual care or the HIEP, (2) recommendations for modifications on 
delivery of usual care or HIEP and (3) recommendations for modifications to the intervention content.  
 
 
 

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3. Study Population 
Age of Participants: 18-50 
Sample Size: All Centers: 150 
 
3.1 Inclusion Criteria: 
Aim 2: 
1. Are currently a cancer patient and within 1 year of their diagnosis and actively 
receiving chemotherapy, surgery, radiation, and/or hormonal therapy 
2. Are a patient at Primary Children’s Hospital, Intermountain Medical Center, or 
Huntsman Cancer Institute 
3. Were between the ages of 17 and 39 years old when diagnosed with their first 
primary cancer and are currently aged 18 – 40 years old 
4. Speak English 
Aim 3: 
1. From participants in both the control group and intervention group, 20 participants 
will be invited to participate in an exit interview. 
 
3.2 Exclusion Criteria: 
Aim 2 & 3: 
1. Are unable to participate due to developmental delay 
2. Do not read or understand English comfortably 
3. Do not have access to an electronic device with video conferencing capability (e.g., 
smartphone, laptop, etc.). 
4. Currently do not have health insurance coverage 
 
 
 

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4. Study design  
Non-Experimental and/or Descriptive Research Design  
• 
Interviews and Focus Groups Survey/Questionnaire Research  
Experimental and/or Interventional Research Design  
• 
Randomized Trial 
5. Study Procedures 
5.1 Recruitment/Participant Identification Process 
5.1.1 Enrollment Goals 
1. Aim 2: 6-7 participants per month, for a total of 80 participants. N=40 HIEPenhanced 
care, intervention (Group A), N=40 for usual care (Group B), stratified by age and 
treatment site and randomized to study arm (Group A or B) N=40 18-26 year-olds, N=40 
27-40 year-olds.  
2. Aim 3: Have 20 participants from Group A and B participate in study interviews, 
stratified by age. N=10 18-26 year-olds, N=10 27-40 year-olds  
5.1.2. Process 
• 
Referrals via healthcare provider (doctors, nurses, social workers, etc.) or navigator: 
Patients who are connected with the HIAYA Cancer Care Program will be approached for 
recruitment. The navigator will refer patients that are enrolled in the navigation 
program to members of the study team. AYAs who are referred will be contacted by 
study staff via phone, by text, by email, or in person to describe the study and 
determine if they are interested in participating.  
• 
Referrals will be made from staff at the Cancer Learning Center at Huntsman Cancer 
Hospital.  
• 
We will advertise this study through flyers left in clinics, on pin boards, and digital 
advertisements. Study advertisements will also be posted on the HIAYA program, 
Huntsman Cancer Institute, and study specific social media accounts 
• 
Clinic screening: study team will screen clinic lists via EMRs. A recruitment letter or e-
mail will be sent prior to the phone call. The consent cover letter will be sent along with 
the recruitment letter.  
5.2 Informed Consent 
Location(s) where consent will be obtained:  
University of Utah - Huntsman Cancer Hospital  
Intermountain Healthcare - Primary Children's Hospital and Intermountain Medical Center  
 
Description of the consent process(es), including the timing of consent:  

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Participants will be offered enrollment and consented to the study by trained research staff 
through e-mail, over the phone, through text message, or in-person. The consenting process will 
take place through the REDCap process when participants choose to consent over email, 
through text message, or over the phone. When consenting inperson participants will be asked 
to read through and sign a paper consent while in a clinic room, or other private locations. There 
is no required waiting period before enrollment. Participants will be able to discuss the consent 
form, enrollment criteria, or any other questions related to the study with study staff over e-
mail, phone, text message, or in-person. Documentation of consent will be recorded via a 
physical informed consent form, with signature and PHI authorization or a digital copy of 
informed consent with signature and PHI authorization, collected via REDCap. 
5.3 Study duration 
We will recruit patients to the RCT from approximately August 2020 through April 2021. Exit 
interviews after the RCT will last until late 2021, and data analysis is anticipated through June 
2022.  
5.4 Randomization  
Aim 2: All participants will be randomized into one of two groups: A or B. Randomization will be 
stratified by age at cancer diagnosis (17-26; 27-39 years) and treatment site and blocked into 
groups of 4 patients (2 control, 2 intervention) to ensure that control and intervention groups 
are approximately balanced by age and within sites. Random allocations within strata will be 
computer generated and automatically assign individuals to a study arm after the study 
coordinator determines patients’ eligibility and obtains consent.  
 
Aim 3: 20 participants will be randomly invited to participate in an exit interview. Those 20 
participants will be equally pulled from the control and intervention group.  
 
5.5 Procedures 
Aim 2: 
Both Group A and Group B: After consent, all study participants will:  
• 
Participate in a baseline survey, which will also collect contact information. 
Questions included in the baseline survey will assess familiarity with ACA 
policies, health insurance literacy, cost-related literacy, comfort discussing 
medical costs with providers, financial toxicity, insurance coverage, coverage-
related variables and moderators (baseline demographic characteristics such as 
age, gender, education and health insurance status).  
 
• 
Participate in a follow-up survey. This is anticipated to occur 3 months post-
program completion for the intervention group and 5 months after taking the 
baseline survey for the control group. Questions will include many of the same 
questions regarding insurance coverage, cost-related, and patient needs, in 
Commented [KR1]: Deleted Consent section. It was 
duplicated from informed consent section,  

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addition to the satisfaction, feasibility, and acceptability of the navigation 
program.  
 
• 
The study coordinator will oversee data collection from the study participants. 
The research coordinator will review weekly, automated REDCap reports 
summarizing accrual information and information on missing data. Participants 
who do not complete REDCap assessments during specified time windows will 
receive reminders from the coordinator to complete the assessments. 
Reminders will be provided via telephone, mail, text, email, and/or in-person.  
 
Group A: HIEP-enhanced intervention 
• 
All participants will be provided information on how to log onto Zoom for video 
conferencing capabilities.  
• 
Participants enrolled in this intervention group will also complete the usual care 
needs assessment when they first meet with the navigator, who will ensure that 
they are connected with appropriate resources same as the usual care arm. This 
includes various support materials as they receive standard cancer patient 
services.  
• 
Following this first navigation visit, the main intervention will be delivered by 
one of the two trained patient navigators and will consist of 4 bi-weekly sessions 
over 2 months.  
• 
These sessions will last up to 30 minutes each, and may be delivered in-person, 
over the phone, or via a videoconferencing portal (Zoom). The 
videoconferencing portal will be the preferred method, but the participant 
preferences will be considered. All navigation sessions will be recorded through 
Zoom or audio recorded with team recorders when navigation is given in 
person, for fidelity purposes. The navigator will use each participant’s baseline 
survey responses and age to personalize these sessions.  
o Sessions 1 and 2 will provide information on current insurance policies 
and types of insurance, as well as to obtain information on the 
participant’s health insurance and understanding of financial concepts 
related to medical care.  
o Session 3 will provide an overview of insurance policies (e.g., Affordable 
Care Act), how to navigate resources, and options for covering services.  
o Both Sessions 3 and 4: The navigators will work with the participants to 
address barriers such as coverage denials, seeking lower-cost 
alternatives, and discussing out-of-pocket costs with their providers.  
o Session 4 will provide in-depth information on cost-sharing components 
of insurance and strategies for helping participants to estimate costs of 
care and to budget.  

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Group B: Usual care  
• 
Usual care will consist of standard patient navigation appointments, which do 
not currently include education to address health insurance or cost-related 
literacy. If the patient asks for information concerning health insurance or cost 
of their treatment in-person, navigators audio record the conversation for 
fidelity purposes 
• 
When patients first meet with a navigator, they complete a brief intake form on 
health education needs, work and school, gaps in support, fertility concerns, 
and finances and insurance. Please see Appendix A for intake information. 
Aim 3: 
• 
Group A and B participants will be included in these procedures.  
• 
After the follow-up survey is complete, an interview will be scheduled with selected 
participants (N=20), stratified by age. The two age subset groups are 18-26 year-olds 
and 27-39 year-olds. This one time interview will be scheduled and conducted by a 
study team member, and will be delivered through the videoconferencing portal, via 
phone, or inperson (just like the health insurance education intervention sessions). 
These are estimated to be about 60 minutes long in duration.  
• 
Data from participants in these interviews will be recorded and transcribed.  
6. Data Collection 
Following written informed consent, at pre-intervention we will collect data on participants’ 
demographics, medical history, financial status, and family history through a protected online 
questionnaire, by communicating in person, over the phone, or by email.  
 
The team will use the Research Electronic Data Capture (REDCap) software application to collect 
and manage the data for this project. The REDCap database is on a secure server maintained by 
the Huntsman Cancer Institute (HCI) bioinformatics shared resource and the HCI Computer and 
Technology Group (CATG).  
 
Voice recordings will be stored securely on the Kirchhoff Team drive at Huntsman Cancer 
Institute or on password protected computers at HCI. 
 
7. Risks and Benefits 
Questions and discussion about health insurance and medical costs can be psychologically 
stressful to participants, and there is the risk of loss of confidentiality and/or loss of privacy.  
 
Participants may learn more about health insurance coverage and access. Societal benefits 
include greater insight of AYA cancer patients and insurance understanding. 

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8. Cost and Compensation 
• 
There is no cost to be in this study  
• 
There will be gift card compensation available for participants, ranging from $40 to $60 
depending on procedures completed.  
o Baseline Survey completion: $20 gift card Follow-up  
o Survey completion: $20 gift card  
o Post-intervention session interview completion: $20 gift  
 
9. Statistical Methods, Data Analysis and Interpretation 
9.1  Aim 2 
We will use descriptive statistics to report on the following endpoints: intervention feasibility 
(e.g., percent of AYA cancer patients enrolled), acceptability (e.g., satisfaction) and efficacy 
(e.g., health insurance literacy, cost-related literacy, provider communication about cost, 
financial toxicity). We will run descriptive statistics to examine group differences at baseline; 
any imbalanced covariates will be included as adjustment variables. We will use chi-squared 
and independent sample t-tests to compare end-of-treatment changes in preliminary efficacy 
outcomes between the two groups. 
 
Although a 3-month post treatment follow-up period is brief, we will also conduct exploratory 
comparisons with other study outcomes to see if trends change in the expected direction. We 
will compare baseline/end-of-treatment, within groups, with paired t-tests for continuous 
outcomes and McNemar’s tests for categorical outcomes. In addition, we will use bivariate 
statistics to examine demographic and cancer-related factors (type of diagnosis, age at 
diagnosis, treatment), and health status with feasibility, acceptability, and preliminary efficacy 
outcomes. Multivariate analyses, adjusting for imbalanced covariates, will be conducted in the 
context of linear or logistic models, potentially with random effects for patient, as appropriate. 
We will test for differences by sex, age, sexual orientation, and race/ethnicity in the effects. We 
will also conduct analyses to determine moderators of the intervention effects. Tests of 
interactions between covariates (moderation analyses) will be conducted in the context of both 
the unadjusted and adjusted versions of the regression models with effects for both the 
covariate of interest and the treatment arm, as well as additional covariate by covariate 
interaction terms.  
 
Our primary outcomes of interest are feasibility and acceptability of the HIEP program. We 
expect 80 participating AYAs to enroll throughout 1 year of the pilot RCT implementation. We 
expect at least 72 to complete the 3 month follow-up (10% attrition rate) based on retention in 
our previous studies. However, for our secondary outcomes we anticipate adequate sample 
size to explore meaningful differences in the outcomes. For example, for financial toxicity, our 

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preliminary data show that for the 11-item COST score,77 average scores at enrollment in the 
navigation program for AYAs ranges from 25.79 (standard deviation, SD=10.11) for younger 
AYAs to 18.22 (SD=10.81) for older AYAs. Lower COST scores indicate greater financial distress. 
We expect to have >80% power to detect differences in the mean improvement in the COST 
score between the intervention and control groups which differ by 0.67 SD based for our target 
N=72 completing the RCT. 
 
9.2 Aim 3  
Interviews will be conducted either in person or over the phone or through Zoom 
videoconferencing, recorded, and transcribed for analysis in NVivo 11 (or the most recent 
version of NVIVO). Our goal will be to understand (1) satisfaction with the intervention, (2) 
recommendations for modifications on delivery modality, and (3) recommendations for 
intervention topics and content modifications to identify components of the HIEP that require 
refinement prior to scaling the intervention to a larger sample, and (4) understanding of current 
patient navigator program and how that can be improved.  
Using NVivo, we will conduct a modified framework thematic analysis. The goal of a modified 
framework thematic analysis is to provide a highly structured thematic summary of qualitative 
data, particularly from semi-structured interviews. The qualitative coding will be led by Dr. 
Kirchhoff and research staff with input from other qualified study team members. A Kappa ≥0.80 
after double coding the first 3 transcripts to ensure high reliability is the goal. Particular focus 
will be given to identifying intervention implementation barriers for AYAs by age, insurance, and 
cancer type, as well as feasibility concerns from the navigators, to inform future intervention 
dissemination steps. 
 
 
 
 
 
 
 
 
 
 
 

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Appendix A  
 

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