Pilot Study of a Decision Aid Intervention for Family-building After Cancer
Phase: NA
Conditions: Cancer
Sponsor: Stanford University

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
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TITLE:  Pilot Study of a Decision Aid Intervention for Family-building After Cancer 
Coordinating Center 
Department of Psychiatry & Behavioral Sciences 
Stanford School of Medicine 
401 Quarry Rd., 
 
Palo Alto, CA 94305 
Protocol Director  
Catherine Benedict, PhD 
401 Quarry Rd., 
 Palo Alto, CA 94305 
 
cbenedict@stanford.edu  
Co-Investigators 
David Spiegel, MD 
401 Quarry Rd., 
 Palo Alto, CA 94305 
 
dspiegel@stanford.edu  
Lidia Schapira, MD 
900 Blake Wilbur Dr, Palo Alto, CA 94304 
 
schapira@stanford.edu  
Biostatistician 
Catherine Benedict, PhD 
401 Quarry Rd., 
 Palo Alto, CA 94305 
 
cbenedict@stanford.edu  
Study Coordinator 
Catherine Benedict, PhD 
401 Quarry Rd., 
 Palo Alto, CA 94305 
 
cbenedict@stanford.edu  
23 April 2021 
IRB-52143 
VAR0190 
NCT04059237 
SRC approval date:  06 October 2022 

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TABLE OF CONTENTS 
 
1.0  
SPECIFIC STUDY AIMS ................................................................................................ 4 
2.0  
BACKGROUND AND RATIONALE ............................................................................... 4 
3.0  
STUDY ENROLLMENT AND PARTICIPANT ELIGIBLITY ........................................... 6 
3.1 
STUDY ENROLLMENT ......................................................................................................... 8 
3.2 
PARTICIPANT CRITERIA ...................................................................................................... 8 
3.3   
ENROLLMENT .................................................................................................................... 8 
4.0  
MATERIAL AND METHODS .......................................................................................... 8 
5.0 
STATISTICAL CONSIDERATIONS ............................................................................. 11 
5.1 
OUTCOME MEASUREMENTS ............................................................................................. 11 
5.2 
ANALYSIS PLAN ............................................................................................................... 14 
5.3 
SAMPLE SIZE ................................................................................................................... 15 
5.4 
CLINICALTRIALS.GOV OUTCOMES .................................................................................... 16 
6.0  
DATA MANAGEMENT CONSIDERATIONS ............................................................... 17 
6.1 
DATA MANAGEMENT ........................................................................................................ 17 
6.2 
CONFIDENTIALITY ............................................................................................................ 17 
6.3 
PROTOCOL REVIEW AND AMENDMENTS ............................................................................ 18 
REFERENCES ........................................................................................................................... 19 
APPENDIX A 
PARTICIPANT ELIGIBILITY CHECKLIST ..................................................... 22 
APPENDIX B 
PATIENT QUESTIONNAIRE TABLE OF CONTENTS ................................... 24 
APPENDIX C 
BACKGROUND QUESTIONNAIRE ................................................................ 25 
APPENDIX D 
MEDICAL HISTORY  ....................................................................................... 27 
APPENDIX E 
REPRODUCTIVE HISTORY  .......................................................................... 28 
     Pre-treatment Fertility Experience  ......................................................... 29 
     Post-treatment Follow-up Care  ............................................................... 30 
APPENDIX F 
DECISION CONFLICT SCALE ....................................................................... 32 
APPENDIX G 
UNMET INFORMATION NEEDS .................................................................... 33 
APPENDIX H 
ILLNESS PERCEPTIONS QUESTIONNAIRE  ............................................... 34 
APPENDIX I 
REPRODUCTIVE CONCERNS AFTER CANCER (RCAC) SCALE .............. 37 
APPENDIX J 
IMPACT OF EVENTS SCALE  ........................................................................ 39 
APPENDIX K 
PROMIS SELF EFFICACY  
     General Self Efficacy  ............................................................................... 40 
     Self-Efficacy – Managing Emotions ........................................................ 41 
APPENDIX L 
EHEALTH IMPACT QUESTIONNAIRE (EHIQ) PART 1 AND PART 2 
     Part 1 (T1 only) .......................................................................................... 42 
     Part 2 (T2 & T3 only) ................................................................................. 43 
APPENDIX M 
COMPREHENSIVE SCORE FOR FINANCIAL TOXICITY (COST)  ............... 45 
APPENDIX N 
INCHARGE FINANCIAL DISTRESS/FINANCIAL WELL-BEING SCALE  .... 46 
APPENDIX O 
UNCERTAINTY MANAGEMENT PREFERENCES ........................................ 48 

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APPENDIX P 
BRIEF HEALTH LITERACY SCREENER   ..................................................... 49 
APPENDIX Q 
HEALTH LITERACY SCREENING QUESTIONNAIRE (HL-SQ) ................... 50 
APPENDIX R 
ACTIONS & CONCOMITANT CARE (T2 AND T3 ONLY) ............................. 51 
APPENDIX S 
FAMILY-BUILDING WEBSITE USE (T2 AND T3 ONLY) ............................... 52 
APPENDIX T 
STAGE OF DECISION-MAKING .................................................................... 53 
APPENDIX U 
PREPARATION FOR DECISION-MAKING (T2 ONLY) ................................. 54 
APPENDIX V 
WEBSITE FEEDBACK (T2 ONLY) ................................................................. 55 
 

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1.0  
SPECIFIC STUDY AIMS  
Many young adult female (YA-F) cancer survivors (18-39 years old) who received gonadotoxic 
therapy will experience fertility problems when trying to build a family.  After cancer, having a child 
will often require assisted reproductive technology (ART), surrogacy, or adoption.  However, there 
are significant informational, psychosocial, and financial barriers to ART and adoption.  Lack of 
awareness, unrealistic expectations, distress, and avoidance or postponement of fertility care put 
YA-Fs at-risk for being unable to have a child when they are ready or experiencing greater 
difficulty, distress, and higher costs during the process.  
The overall goal of this work is to pilot test a single-arm intervention of a decision aid tool 
(interactive website identified as the “Roadmap to Parenthood”) to assist young adult female 
cancer survivors in making decisions and preparing for family-building after cancer.  
Study Objective 1:  Examine feasibility and acceptability of a decision aid intervention in a 
single-arm pilot trial.  
Study Objective 2:  Obtain preliminary effect sizes of the decision aid intervention using a pre-post 
test design.  
2.0  
BACKGROUND AND RATIONALE  
While cancer treatments are lifesaving, they come at a cost.  Many young adult female (YA-F) 
cancer survivors have received gonadotoxic therapy and are at-risk for premature ovarian failure or 
unable to carry a pregnancy.  As a result, family-building after cancer often requires assisted 
reproductive technology (ART), surrogacy, adoption, or other solutions.  As many as 74% of YA-F 
survivors hope to have children someday and fertility is ranked as the second-most distressing 
survivorship issue after fears about recurrence.1,2  Pre-treatment counseling on infertility risks and 
fertility preservation (such as egg or embryo freezing) is an established part of care for 
reproductive-aged patients,3,4 but only 15% of YA-Fs receive follow-up fertility counseling after 
treatment is completed, even after “high-risk” regimens such as alkylating chemotherapy.5  
Furthermore, there is limited evidence on the gonadotoxic effects of novel therapies to guide 
providers in counseling their patients.  Most survivors are unsure of their reproductive potential and 
distressed about their chances for achieving parenthood.6,7  Without proper follow-up, YA-Fs are 
at-risk for experiencing unexpected premature ovarian failure, thereby eliminating chances for 
having a biologically-related child, and/or facing greater challenges with ART, surrogacy, or 
adoption including medical, emotional, legal, and financial complications.  
To address this unmet need, Benedict and colleagues developed an interactive, web-based 
decision aid and planning tool (“Roadmap to Parenthood”) for family-building after cancer 
(NCI-funded).  To our knowledge, this is the first evidence-based resource to help YA-Fs become 
informed, cope with distress, and guide self-management toward “next steps” for fertility care and 
family-building preparation.  The tool was designed to help YA-Fs learn about options for 
family-building, identify personal priorities and goals (values-clarification), and initiate 
self-management around “next steps.”  It was developed based on extensive pilot work12 and 
theory,15,16 following healthcare decision aid guidelines17,18 and patient-centered design principles 
(NCI R03CA212924, K07CA229186).  

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This work was based on several prior studies led by the PI: 
1. YA-Fs’ uncertainty and unmet fertility decision support needs 7–9  
A national sample of YA-F cancer survivors completed an online survey about pre- and 
post-treatment fertility experiences and decision uncertainty about family-building (N = 346).  
Among premenopausal YA-Fs who wanted future children, 64% worried about fertility 
problems, yet only 10% had undergone a fertility evaluation since their treatment ended.  
Sources of decisional conflict about post-treatment family-building included:  feeling 
uninformed (87%), feeling unclear about personal values (74%), and wanting more 
advice/guidance (70%) and support (35%).  Greater unmet needs and reproductive 
concerns contributed to greater decisional conflict and lower quality of life.  
2. Financial stress of family-building 10  
This study examined quantitative and qualitative data from 46 patient applications for 
family-building financial support to “The Samfund,” an organization dedicated to addressing 
the financial effects of young adult cancer.  Overall, the costs of family-building (via ART and 
adoption) were described as overwhelming and unexpected that far exceeded initial 
expectations and leading to savings depletion, loans, and “maxing out” credit cards.  Cancer 
financial effects (eg, medical debt) further drained resources.  Decisions about how to spend 
limited financial resources, whether to incur debt and if so, how much, were weighed against 
dreams of parenthood.  Survivors generally felt unprepared for the financial hurdles and 
were simultaneously fearful of being unable to achieve parenthood and long-term 
implications of depleting savings and accruing debt.  
3. Preference for age-specific, technology-based support 19 
We conducted a qualitative study to better understand YA survivors’ (N = 19) perceptions of 
cancer survivorship care and research, in partnership with Stupid Cancer, a young adult 
cancer patient organization.  One of the most striking findings was that YAs commonly 
described feeling dissatisfied, frustrated, and angry with the lack of age-specific support 
resources.  There was an overwhelming preference for technology-based patient support to 
allow for more control, flexibility, and convenience; and they wanted design features and 
language to be appealing to their age group.  Findings have informed our study design, 
which includes collaboration with Patient Research Partners and patient organizations to 
ensure a patient-centered approach to product development is taken.  
4. YA-Fs’ decision support needs, preferences, and perceived barriers  
Dr Benedict (PI) is currently running a mixed methods study to conduct formative research 
about YA-F survivors’ decision-making about fertility and family-building after cancer 
treatment (funded by the National Cancer Institute; 1R03CA212924-01).  This in-depth 
examination aims to identify survivors’ unmet needs, preferences for support services, and 
perceived barriers to pursuing ART or adoption.  The primary aim is to collect data to inform 
the content and delivery of a patient decision support and planning tool.  Our preliminary 
data analysis indicates YA-Fs (N = 116) have large knowledge deficits; difficulty coping with 
uncertainty, distress, and disappointment; anticipatory anxiety; and a preference for digital 
support platforms designed for their age (eg, non-technical language use).  

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Conceptual Framework  
For YA-Fs who received gonadotoxic therapy, managing infertility risks, deliberating about 
family-building options, and preparing for barriers involves complex decision-making based on 
uncertainty.  Uncertainty may include:  medical uncertainty (eg, inexact estimates of fertility 
potential, unknown financial costs), personal uncertainty (eg, lack of clarity about priorities), 
social uncertainty (eg, managing relationships), and situational or systems-level uncertainty 
(eg, access to care).16  As specified by Self-Regulation Theory, a system of conscious personal 
management that involves the process of guiding one's own thoughts, behaviors and feelings to 
reach goals, illness-related cognitions and emotions are central to and predictive of patients’ 
decision-making processes and health risk management, particularly in situations of 
uncertainty.20,21  Cognitive processes include beliefs about the health threat such as its causes, 
consequences, controllability, and overall understanding.  Emotional processes include affective 
reactions such as worry or distress.  Cognitive-emotional responses influence decision making 
through resulting risk perceptions, outcome beliefs, expectations, and judgments about expected 
consequences.  YA-Fs facing potential infertility risks report avoidance of fertility information as a 
way to avoid distress and maintain hope.6  While adaptive in the short-term, avoidant coping may 
increase their risk of missing their narrowed window of reproductive opportunity or experiencing 
greater barriers to family-building.  
The study intervention is the Roadmap to Parenthood decision aid and planning tool (previously 
developed) addresses the maladaptive cognitive-emotional and behavioral responses YA-Fs’ may 
have adopted to manage uncertainty and distress, and offer alternative planning strategies to 
support decision making, address barriers, and build hope that parenthood is possible.  The 
Roadmap to Parenthood is an interactive website intended to improve decision-making regarding 
family-building after cancer.  Effectiveness (efficacy) of Roadmap to Parenthood is measured by a 
number of questionnaires (surveys), also web-based.  Representations of these data collection 
surveys are provided as appendices to this protocol document.  
Summary of the premise of the study.  YA-Fs report a lack of knowledge coupled with high 
levels of distress about their fertility and are in need of continued decision and planning support to 
achieve their desired family-building goals.  To address this gap, the proposed study will pilot test 
the first theoretically driven, evidence-based decision aid and planning tool for family-building after 
cancer.  We hypothesize the web-based tool will help YA-Fs become informed, manage negative 
affect, and plan financially for future costs, thereby addressing key barriers to family-building after 
cancer, while inspiring hope that parenthood will be achieved.  Young adult cancer survivors are 
an underserved patient group characterized by disparities in service delivery and outcomes.22  
Developing an intervention to support post-treatment family-building will fill a critical unmet service 
need in AYA survivorship care.  
3.0  
STUDY ENROLLMENT AND PARTICIPANT ELIGIBLITY 
3.1 
Study Enrollment 
Recruitment will primarily be conducted remotely. This study will enroll YA-F cancer 
survivors who have completed cancer treatment and thus may not need to return to 
Stanford for in-person visits.  We will obtain a Waiver of Authorization for Recruitment to 
conduct chart reviews and telephone screens to determine eligibility.  

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In order to recruit eligible patients who are returning to Stanford for post-treatment 
survivorship care visits, we will partner with the Stanford Adolescent and Young Adult 
Cancer (SAYAC) program, led by Pamela Simon, who will identify and screen eligible 
patients and refer those who are interested.  Recruitment may also occur from other clinics 
within the Stanford system including the Cancer Survivorship Program, Women's Cancer 
Center, and the Reproductive Endocrinology and Infertility center through patient referral 
and study advertisements.  We will also partner with the Stanford Research Registry to 
recruit participants.  
We will also recruit through collaborations with young adult cancer patient organizations.  
The PI (Catherine Benedict) works closely with several organizations including Stupid 
Cancer, of which she is a Board Member, Lacuna Loft, and The Samfund. These 
organizations have committed to supporting this project including through social media 
posts to aid recruitment.  Using social media and remote recruitment and consenting 
procedures is advised for recruiting young adult patient populations. We will recruit 
participants using organization listservs and posting on social media outlets, using IRB-
approved ads.  Followers of these organizations will see an IRB-approved email message 
or social media post with a link to access study contact information and to complete a 
personal contact information and screener form (online version of Appendix A, Eligibility 
Checklist). The social media ads will instruct viewers to click on a link that will direct them 
to a secure, HIPPA-compliant website to provide contact information via a REDCap survey 
tool. For ads that we post (and not partnering organizations), we will set up all ads with 
security settings that do not allow participants or others from the public to post publicly on 
the ad.  We have previously conducted recruitment in this way and been successful 
including when recruiting as a part of NCI-funded studies. Remote consenting procedures 
will be done with patients recruited through social media.  
We expect to primarily conduct informed consent remotely. Remote consent via telephone 
will occur at the PI’s office in the Department of Psychiatry and Behavioral Sciences (401 
Quarry Rd).  Following recruitment conversations (in-person or telephone), consenting will 
include having a patient read an informed consent document and providing an electronic 
signature via REDCap, an online HIPPA-compliant platform. Remote consenting will 
include sending a participant a link to access the informed consent document online.  
In-person informed consent procedures will be done using a study provided tablet.  
Participants will be offered a paper-based copy of the informed consent document, if 
preferred.  
The PI (Catherine Benedict) and/or a Clinical Research Assistant (TBD) will obtain 
informed consent for all participants.  
Advertising at Stanford clinics will include posting of IRB-approved fliers in relevant 
locations, pending approval and agreement from clinic personnel and collaborators.  Other 
advertisements will include social media posts in collaboration with young adult cancer 
patient organizations.  
We will create a REDCap screening survey to guide screening procedures and assess 
eligibility (Appendix A) and to guide screening (Appendices C to E).  The survey will include 
questions aligned with eligibility criteria.  All patients being screened for eligibility will have a 

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parallel REDCap screening survey completed prior to completing informed consent and 
completing study enrollment.  
Screening data will be kept confidential and stored in HIPPA-compliant platforms according 
to Stanford policies.  
3.2 
Participant Criteria  
 
 
Inclusion criteria: 
• 
Female 
• 
Aged 18 to 45 years old 
• 
Understands verbal and written English 
• 
Completed cancer treatment known to have gonadotoxic effects (eg, systemic 
chemotherapy, surgery affecting reproductive organs or hormone regulation, and/or 
pelvic radiation)  
• 
Desires future children or uncertainty regarding family-building plans 
• 
Access to the Internet and use of a computer, tablet, or smartphone 
 
 
Exclusion criteria: 
• 
Currently undergoing cancer treatment excluding long-term adjuvant or 
maintenance therapies, such as tamoxifen 
• 
Significant physical or mental disability that prevents completion of study activities 
Note:  Survivors on adjuvant maintenance or endocrine treatment, such as tamoxifen, will 
not be excluded because clinical guidelines allow treatment delay or hiatus to 
accommodate fertility preservation, egg extraction for surrogacy, or pregnancy for some 
patients, and because patients may be interested in adopting.  
3.3   
Enrollment 
The target sample size is 100.  
4.0  
MATERIAL AND METHODS  
We conduct a single-arm pilot study of the Roadmap to Parenthood decision aid intervention for 
family-building after cancer.  The Roadmap to Parenthood consists of an online decision aid tool 
that provides information, support, and guidance to YA-F cancer survivors making decisions about 
fertility and family-building options after cancer.  The decision aid intervention will be presented as 
a webpage accessed via www.familybuildingaftercancer.com.  The Roadmap to Parenthood 
website is a multi-page interactive resource that provides information, resources, and potential 
questions a participant might use to gather more information about family-building.  The decision 
aid intervention is intended to help women investigate their options to have a child after cancer 
treatment and make decisions relative to their condition that are aligned with their family-building 
goals.  
Separate from the Roadmap to Parenthood tool, participants will be asked to complete 
psychosocial assessment questionnaires (table of contents to the questionnaires in Appendix B) to 
track decisional conflict (Appendix F, the primary outcome) and cognitive-emotional and behavioral 
functioning (collectively, the secondary outcomes in subsequent appendices), as well as a priori 
covariates and process variables including sociodemographic and medical characteristics, 
uncertainty management preference, financial well-being, and health literacy.  The questionnaires 

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are all quantitative assessments used to assess effectiveness of the Roadmap to Parenthood 
intervention and include:  
• 
Decisional Conflict Scale (DCS), Appendix F:  16-item measure, answered on a 5-point 
scale ranging from “strongly agree” to “strongly disagree” with higher scores indicating 
greater uncertainty (worse outcome).  
• 
Unmet Fertility Information Needs, Appendix G:  5-item measure, answered with yes/no 
response options with higher scores indicating better perceived knowledge 
(better outcome).  
• 
Illness Perceptions Questionnaire-Revised (IPQ-R), Appendix H:  28 items, answered on a 
5-point scale ranging from “strongly disagree” to “strongly agree” with higher scores 
indicating worse outcomes.  
• 
Reproductive Concerns After Cancer (RCAC) Scale, Appendix I:  8-item measure, 
answered on a 5-point scale from “strongly disagree” to “strongly agree” with higher scores 
indicating greater distress (worse outcome).  
• 
Impact of Events Scale-Revised (IES-R) subscales, Appendix J:  15 items, answered on a 
5-point scale ranging from “not at all” to “extremely” with higher scores indicating greater 
distress (worse outcome).  
• 
PROMIS General Self-Efficacy and Self-Efficacy for Managing Emotions subscales, 
Appendix K:  16 items, answered on a “I am not at all confident” to “I am very confident” 
with higher scores indicating greater self-efficacy (better outcome).  
• 
eHealth Impact Questionnaire (e-HIQ), Part  1 and 2, Appendix L:  26-item measure, 
answered on a 5-point scale with higher scores indicating a greater, more positive impact.  
• 
COmprehensive Score for Financial Toxicity (COST), Appendix M:  10-item measure, 
answered on a 5-point scale ranging from “not at all” to “very much” with higher scores 
indicating greater financial toxicity (worse outcome).  
• 
InCharge Financial Distress/Financial Well-being, Appendix N:  8-item measure, answered 
on a 10-point scale with response options varying across items (eg, “overwhelming stress” 
to “no stress at all” and “worry all the time” to “never worry”) with higher scores indicating 
better financial well-being (better outcome).  
• 
Uncertainty Management Preferences Scale, Appendix O:  15-item measure, answered on 
7-point scale from ‘strongly disagree’ to ‘strongly agree’ with higher scores indicating a 
stronger preference.  
• 
Brief Health Literacy Screener, Appendix P:  3-item measure, answered on a 5-point scale 
ranging from “always” to “never” with higher scores indicating better health literacy (better 
outcome).  
• 
Health Literacy Screening Questionnaire, Appendix Q:  8-item measure, answered on 4- 
and 5-point scales with response options varying across items (eg, “very bad” to “very 
good”; “disagree strongly” to “agree strongly”; and “never” to “always”) with higher scores 
indicating better health literacy (better outcome).  

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The questionnaires will be administered at timepoint T1 (pre-intervention baseline);  at 
timepoint T2 (1 month, within 30 days);  and timepoint T3 (2 months subsequent to the 
subject-specific T2 timepoint, within 60 days).  Questionnaires will be administered 
electronically, with access granted shortly before the survey is due.  These time points 
were chosen to allow users to review the content and have time to access medical records, 
finances, or insurance information, if needed, to use in interactive features and to develop 
their action plan.  Participants will be sent reminders to complete the surveys and study 
staff will follow up with participants who do not complete surveys to obtain missing data.   
After completing the baseline questionnaire, participants will be given a link to access the 
web-based decision aid and planning tool.  The website utilizes a responsive design format, 
which will allow users to access the tool on any device or operating system (computers, 
laptops, tablets, or mobile phone).  Access to the website will remain open for the duration 
of the study.  
To complete Study Objective 1, feasibility and acceptability metrics will be collected.  
Feasibility of the decision aid intervention and study design will be evaluated with rates of 
eligibility, enrollment, and attrition.  Reasons for refusal to participate will be tracked and 
evaluated.  Acceptability will be evaluated using survey completion rates and web analytics 
to track access to website modules and exercises including time spent and click stream 
data.  
To complete Study Objective 2, effect size estimates will be calculated for reduction of 
decision conflict (primary outcome; Decisional Conflict Scale [DCS]23) and completion of an 
action plan module that will aim to prepare users for foreseeable barriers and suggest 
preparatory actions (eg, financial planning).  Effect size estimates will also be calculated for 
secondary outcomes including unmet fertility information needs, cognitive-emotional 
representations of infertility or risk of infertility (ie, the Illness Perceptions 
Questionnaire-Revised24 and the Reproductive Concerns after Cancer Scale25), distress 
(ie, the Impact of Events Scale-Revised26), and self-efficacy (PROMISE Self-Efficacy 
subscales27).  Data will also be collected to track change in perceived unmet information 
needs about post-treatment fertility and family-building options (investigator-designed 
questions; alpha = .81) and cancer-specific financial stress and general financial well-being 
(ie, the Comprehensive Score for Financial Toxicity28 measure and the InCharge Financial 
Distress/Financial Well-being scale29).  Impact on users’ confidence discussing issues with 
providers and motivation to take action will be described (eHealth Impact 
Questionnaire-Part 2)30.  Finally, sociodemographic and medical characteristics, uncertainty 
management preference, and health literacy will be collected as covariates.  These 
outcome measures were chosen based on our extensive pilot work and theoretical 
framework.  Website access data will be tracked to assess whether participants use the 
tool as a one-time resource or iteratively as family-building intentions and planning 
strategies may change over time.  
The intervention is designed for individual use.  There is no group format or community 
component to the intervention or website; ie, it is not a group intervention and there is no 
opportunity for participants to interact with one another through the website or in the design 
of the study.  This trial does not involve group- or cluster-randomization and it is not an 
individually randomized group-treatment trial.  

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Study participation will be complete within 3 months; ie, completion of baseline survey (T1), 
access to the web-based intervention, and completion of follow-up surveys at 1- and 
3-months post-baseline (T2 and T3, respectively).  
5.0 
STATISTICAL CONSIDERATIONS 
5.1 
Measurements 
The following measures will be used.  Note that assessments conducted only at baseline 
will not be reported as ClinicalTrials.gov outcomes.   
 
Timepoint 
T1:  baseline; 
pre-intervention 
T2:  1-month 
post-baseline 
T3:  3-months 
post-baseline 
Primary  
Decision Conflict Scale (Appendix F):23  Validated, 16-item 
measure that assesses personal uncertainty in making a 
healthcare decision, modifiable factors contributing to 
uncertainty, and the quality of the decision made.  It is valid, 
reliable, and responsive to change, and the most widely used 
measure of decision-making quality.  Five subscales include:  
Informed, Values clarity, Support, Uncertainty, and Effective 
decision.  Answers are on a 5-point scale from “Strongly agree” 
to “Strongly disagree.”  Scores are transformed to a 0 [no 
decisional conflict] to 100 [extremely high decisional conflict] 
scale such that higher scores indicate a worse outcome.  Scores 
lower than 25 are associated with implementing decisions; 
whereas score exceeding 37.5 are associated with decision 
delay or feeling unsure about implementation.  
X 
X 
X 
Secondary  
Unmet fertility information needs (Appendix G):  
Investigator-designed questions (5 items) will assess perceived 
information needs about fertility and family-building topics.  
Participants will indicate (yes/no) whether they have as much 
information as they want about Risk of infertility, Risk of early 
menopause, Options to assess their fertility status, Options to 
preserve fertility, and Options for alternative family-building.  Our 
prior use of this measure yielded adequate internal consistency 
(α = .81).7  Each item is answered 0-No or 1-Yes and total 
scores range from 0 to 5.  Higher scores indicate better 
perceived knowledge (better outcome).  
X 
X 
X 

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Timepoint 
T1:  baseline; 
pre-intervention 
T2:  1-month 
post-baseline 
T3:  3-months 
post-baseline 
Illness Perceptions Questionnaire-Revised 
(Appendix H):24  Validated measure of cognitive and emotional 
representations of illness.  Items were adapted to refer to 
participants’ infertility risk.  5 subscales will be used (5 to 6 items 
each; 28 items total):  Personal control, Treatment control, 
Illness coherence, Consequences, and Emotional 
representations.  Items are answered on a 5-point scale from 
“Strongly Agree” to “Strongly Disagree,” with higher scores 
indicating worse outcomes.  Each subscale is scored separately, 
and averages are calculated.  The IPQ-R has been validated in 
cancer populations.  
X 
X 
X 
Reproductive Concerns after Cancer Scale 
(Appendix I):25  Validated, 18-item measure of AYA-F cancer 
survivors’ fertility and health concerns with 6 subscales:  
Concerns about fertility potential, Partner disclosure, Becoming 
pregnant, Child’s health, Personal health, and Acceptance.  
Answers are on a 5-point scale, “Strongly Disagree” to “Strongly 
Agree” with higher scores indicating more concern (worse 
outcome).  Mean scores are calculated, ranging from 1 to 5.  
X 
X 
X 
Impact of Events Scale-Revised (Appendix J):26  The 
IES-R is a validated measure of distress in reaction to negative 
life events and will be adapted to measure current subjective 
distress related to infertility risk.  The Intrusive Thoughts 
(7 items) and Avoidance (8 items) subscales assess intrusive 
thoughts and effortful avoidance of reminders about a 
distressing event, respectively.  Answers are on a 5-point scale:  
“Not at all” to “Extremely.”  
X 
X 
X 
PROMIS Self-Efficacy (Appendix K):27  The PROMIS 
General Self-Efficacy and Self-Efficacy for Managing Emotions 
subscales measure the degree to which people feel confident in 
managing various situations, problems, and events and 
confidence in managing difficult emotions.  Questions will 
assess general self-efficacy in these domains and self-efficacy 
in managing fertility and family-building issues and emotions.  
X 
X 
X 

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Timepoint 
T1:  baseline; 
pre-intervention 
T2:  1-month 
post-baseline 
T3:  3-months 
post-baseline 
eHealth Impact Questionnaire, Parts 1 and 2 
(Appendix L):30  Validated, 26-item measure of the impact and 
perception of using a health website, including three subscales:  
Confidence and Identification (9 items; eg, “The website 
prepares me for what might happen to my health.”); Information 
and Presentation (8 items; eg, “The information on the website 
left me feeling confused.”); and Understanding and Motivation 
(9 items; eg, “The website encourages me to take actions that 
could be beneficial to my health.”).  There is a 5-point response 
category for all items ranging from ‘Strongly disagree to Strongly 
agree’.  Scores are summed and transformed to a 0 to 100 
metric, with higher scores indicating a greater, more positive 
impact.  
 
X 
 
Covariates 
COmprehensive Score for financial Toxicity (COST) 
(Appendix M):28  Validated, 11-item measure of cancer-related 
financial effects.  We have previously used this measure to 
assess cancer-related financial toxicity amidst family-building 
costs.  Items are answered on a 5-point scale from ‘Not at all’ to 
‘Very much.’  Scores are summed, ranging from 0 to 44, with 
lower scores indicating worse financial toxicity (worse 
outcomes).  
X 
X 
X 
InCharge Financial Distress/Financial Well-being scale 
(FDFW) (Appendix N):29  Validated, 8-item measure of 
general financial well-being.  It is designed to measure a latent 
construct representing responses to one's financial state on a 
continuum ranging from overwhelming financial distress/lowest 
level of financial well-being to no financial distress/highest level 
of financial well-being.  For each item, responses are on a 
1 to 10 scale and a total mean score is calculated, with higher 
scores indicating better financial well-being (better outcome).  
Norming data is available, and standards were established for 
scale scores on a continuum from 1 to 10, where 
1 = overwhelming financial distress/lowest financial well-being 
and 10 = no financial distress/highest financial well-being.  may 
be compared to population-level data.  
X 
X 
X 

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Timepoint 
T1:  baseline; 
pre-intervention 
T2:  1-month 
post-baseline 
T3:  3-months 
post-baseline 
Uncertainty Management Preferences scale (UMP) 
(Appendix O):31  Validated, 15-item assessment of individual’s 
preference for managing uncertainty including 4 subscales:  
preference to maintain uncertainty through avoidance (4 items), 
preference to avoid insufficient information (3 items), preference 
to increase uncertainty (3 items), and preference to reduce 
uncertainty (5 items).  The scale was developed for managing 
uncertainty related to cancer and was adapted to refer to 
uncertainty with respect to fertility and family-building.  Items are 
answered on a 7-point scale and mean scores are calculated 
with higher scores indicating a stronger preference.  
X 
 
 
Health Literacy (Appendix Q):  The Health Literacy 
Screening Questionnaire (HL-SQ) is a brief, 8-item measure of 
health literacy and will be used to assess individuals’ knowledge 
and skills to prevent disease and to promote health in everyday 
life.32 The tool was developed for use with young adult 
populations and found to be a reliable and valid assessment of 
health literacy.  Items are answered on 4- and 5-point scales 
with higher scores indicating better health literacy.  This will be 
combined with a 3-item Brief Health Literacy Screener that has 
been found to be effective in detecting inadequate health 
literacy.33  Items are answered on a 5-point scale ranging from 
‘always’ to ‘never’ with higher scores indicating better health 
literacy.  
X 
 
 
Stage of Decision Making (Appendix S):  Validated, 1-item 
measure to assess the individual's readiness to engage in 
decision making, progress in making a choice, and receptivity to 
considering or re-considering options.  Scores range from 1 to 6, 
indicating increasing readiness, progress, and conviction in the 
decision making process.  
X 
X 
X 
Preparation for Decision Making (Appendix T):  
Validated, 10-item measure that assesses a patient's perception 
of how useful a decision aid or other decision support 
intervention is in preparing the respondent to communicate with 
their practitioner at a consultation focused on making a health 
decision. 
 
X 
 
The outcome measures do not relate to safety.  
5.2 
Analysis plan 
For Study Objective 1, feasibility and acceptability will be evaluated using descriptive 
statistics of rates of eligibility, enrollment (≥ 80%), attrition, reasons for refusal, and 
completion rates of surveys.  Independent means t-tests and chi-square tests will compare 

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acceptors/decliners and completers/ non-completers.  Web analytics (ie, Google analytics) 
will track logins and calculate web page access, time spent on modules, click stream data, 
and visitor segmentation.  Aggregated and real-time access to this data will help us 
determine real-world use of the website so that we can make design adjustments as 
needed.  Completion of the “action plan” module will be tallied (≥ 70% considered 
acceptable); factors predicting non-completion will be identified using tests of independent 
group differences.  User engagement will be tracked for the entire study period to explore 
whether modules are used as a one-time resource or iteratively.  
For Study Objective 2, for each outcome variable, we will examine the distributional 
qualities, extent of missing data, and satisfaction of assumptions of randomness (ie, MAR, 
MCAR).  Descriptive statistics will evaluate sample characteristics.  Covariates with 
significant relationships with the decisional conflict scale (DCS) will be included in final 
models.  To obtain an effect size estimate of the decision aid in reducing decisional conflict, 
pairwise t-test will evaluate change in DCS mean scores from T1 to T2.  A two-sided 
hypothesis test of the within-subject difference in adjusted means will test the null 
hypothesis (H0:  μ1 = μ2) at α = 0.05.  Rejection of the null hypothesis will indicate a 
significant within-subject DCS mean change from T1 to T2 (H1:  μ1 > μ2).  Effect size 
estimates (Cohen’s d) will be calculated and reported.  On an exploratory level, we will 
examine T1 to T3 and T2 to T3 mean differences to characterize the DCS trajectory.  
Similar procedures will analyze changes in the IPQ-R, RCACS, PROMIS Self-Efficacy, and 
the IES-R as secondary outcomes, controlling for key covariates.  The Stage of Decision 
Making Scale will be assessed, and descriptive statistics will evaluate whether use of the 
decision aid website impacts readiness to engage in decision making, progress in making a 
choice, and receptivity to considering or re-considering options between timepoints T1 and 
T2 and between timepoints T2 and T3.  The Preparation for Decision Making Scale will be 
assessed, and descriptive statistics will evaluate whether use of the decision aid website 
impacts perception of how useful a decision aid or other decision support intervention is in 
preparing the respondent to communicate with their practitioner at a consultation focused 
on making a health decision.  The eHealth Impact Questionnaire-Part 2 will be assessed 
and descriptive statistics will evaluate the impact of using the decision aid website across 
three domains:  1) confidence and identification of health concerns, 2) information and 
presentation of website material, and 3) understanding and motivation to manage health 
issues.  
5.3 
Sample size 
The target sample size is 100.  
Power Estimate:  With a projected 20% attrition rate, we expect 80% power to detect an 
effect size of 0.3 for the T1-T2 change in DCS, with a two-sided paired t-test with a 0.05 
significance level.  We based this on a decision aid intervention for fertility preservation,34 
which reported 14% attrition and DCS means at baseline (M = 51.6, SD = 32.8) and 
1-month post-intervention (M = 16.6, SD = 26.5).  We assumed the same DCS baseline 
mean, but were conservative and assumed higher attrition, higher DCS mean at follow-up 
(M = 40, SD = 26.5), and correlation coefficient between measurements to be 0.3, so that 
the effect size will be 0.33; representing a moderate effect size based on Cohen’s 
taxonomy.  This also follows the DCS manual.  

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5.4 
ClinicalTrials.gov Outcomes 
Similar to endpoints, ClinicalTrials.gov outcomes are assessments that evaluate the 
Roadmap to Parenthood intervention.  Following are the ClinicalTrials.gov outcome titles; 
descriptions, and timeframes.  
Outcome 1 (Primary) 
Title:  Decisional Conflict Scale (DCS)  
Description:  The Decisional Conflict Scale (DCS) is a validated survey that assesses 
personal uncertainty in making healthcare decisions; modifiable factors contributing to 
uncertainty; and the quality of the decision made.  It is reliable and responsive to 
change, and the most widely used measure of decision-making quality.  The survey has 
16 questions, with responses on a 5-point scale ranging from “strongly agree” (1) to 
“strongly disagree” (5).  Total scores range from 16 to 80, with higher scores indicating 
greater uncertainty (worse outcome).  The outcome will be reported as the mean 
difference from baseline to 1 and 3 months, with standard deviation.  
Timeframe:  3 months 
Outcome 2 (Secondary) 
Title:  Unmet Fertility Information 
Description:  This investigator-designed survey assesses perceived information needs 
about fertility topics such as the risk of infertility; risk of early menopause; options to 
assess fertility status; options to preserve fertility; and options for alternative family-
building.  The survey has 5 questions, each answered by a Yes / No response.  Yes is 
scored as 1, and no is scored as 0.  Total scores range from 0 to 5, with higher scores 
indicating greater perceived knowledge.  The outcome will be reported as the mean 
difference from baseline to 1 and 3 months, with standard deviation.  
Timeframe:  3 months 
Outcome 3 (Secondary) 
Title:  Illness Perceptions Questionnaire-Revised (IPQ-R) 
Description:  The Illness Perceptions Questionnaire-Revised (IPQ-R) is a survey that 
assesses cognitive and emotional representations of illness and is validated in cancer 
populations.  The survey has 28 questions, answered on a 5-point scale ranging from 
“strongly disagree” (1) to “strongly agree” (5).  Total scores range from 28 to 140, with 
higher scores indicating worse outcomes.  The outcome will be reported as the mean 
difference from baseline to 1 and 3 months, with standard deviation.  
Timeframe:  3 months 
Outcome 4 (Secondary) 
Title:  Reproductive Concerns After Cancer (RCAC) Scale 
Description:  The Reproductive Concerns After Cancer (RCAC) Scale is a validated 
survey of cancer survivors’ fertility and health concerns.  The survey has 18 questions, 
answered on a 5-point scale ranging from (1) “strongly disagree” to (5) “strongly agree.”  

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Total scores range from 18 to 90, with higher scores indicating greater distress (worse 
outcome).  The outcome will be reported as the mean difference from baseline to 1 and 
3 months, with standard deviation.  
Timeframe:  3 months 
Outcome 5 (Secondary) 
Title:  Impact of Events Scale-Revised (IES-R)  
Description:  Impact of Events Scale-Revised (IES-R) is a validated measure of 
distress in reaction to negative life events that has been adapted to measure current 
subjective distress related to infertility risk.  The survey has 15 questions, intended to 
collect the participant’s assessment of intrusive thoughts (7 questions) and effortful 
avoidance of reminders about a distressing event (8 questions).  The questions are 
answered on a 5-point scale ranging from “not at all” (1) to “extremely” (5).  Total scores 
range from 15 to 75, with higher scores indicating greater distress (worse outcome).  
The outcome will be reported as the mean difference from baseline to 1 and 3 months, 
with standard deviation.  
Timeframe:  3 months 
Outcome 6 (Secondary) 
Title:  PROMIS Self-Efficacy (PROMIS-SE)  
Description:  The PROMIS General Self-Efficacy and Self-Efficacy for Managing 
Emotions subscales measure the degree to which people feel confident in managing 
various situations, problems, and events and confidence in managing difficult emotions.  
Questions will assess general self-efficacy in these domains and self-efficacy in 
managing fertility and family-building issues and emotions.  The survey has 
16 questions, intended to collect the participant’s assessment of general self-efficacy 
(4 items), self-efficacy for managing fertility/family-building issues (4 items), self-efficacy 
for managing difficulty emotions (4 items), and self-efficacy for managing difficult 
emotions related to fertility/family-building (4 items).  The questions are answered on a 
5-point scale ranging from (1) “I am not at all confident” to (5) “I am very confident.”  
The outcome will be reported as the mean difference from baseline to 1 and 3 months, 
with standard deviation.  
Timeframe:  3 months 
6.0  
DATA MANAGEMENT CONSIDERATIONS 
6.1 
Data management  
REDCap will be used to administer online surveys to collect data.  SPSS will be used to 
analyze data.  
6.2 
Confidentiality  
Describe procedures for protecting the privacy interests of participants, including the 
confidentiality of research records and biospecimens.  Describe how study data are coded 

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and linked to participant identity in the study database (for example, is there a separate file 
with all identifying information or are data and identifiers kept together).  
We will follow Stanford policies for maintaining and storing confidential data.  All data files 
stored on computers, external hard disks, or USB thumbs (ie, any electronic devices that 
contain identifiable subject data) will be encrypted and password protected.  Only the PI will 
have access to PHI data.  
6.3 
Protocol Review and Amendments 
The protocol, the proposed informed consent and all forms of participant information related 
to the study (eg, advertisements used to recruit participants) will be reviewed and approved 
by the Stanford IRB and Stanford Cancer Center Scientific Review Committee (SRC).  Any 
changes made to the protocol will be submitted as a modification and will be approved by 
the IRB prior to implementation.  The Protocol Director will disseminate the protocol 
amendment information to all participating investigators.  

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26.   Weiss DS.  The Impact of Event Scale:  Revised.  In:  Wilson JP, Tang CS, eds.  Cross-
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Developing a Tool to Measure the Effects of Using Health-Related Websites.  Value in 
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33.   Chew LD, Bradley KA, Boyko EJ.  Brief Questions to Identify Patients With Inadequate Health 
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34.   Peate M, Meiser B, Friedlander M, et al.  Development and Pilot Testing of a Fertility Decision 
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APPENDIX A:  Participant Eligibility Checklist  
A Participant Eligibility Checklist must be completed in its entirety for each subject prior to 
registration.  The completed, signed, and dated checklist must be retained in the patient’s study file 
and the study’s Regulatory Binder.  
The study coordinator, treating physician, and an independent reviewer must verify that the 
participant’s eligibility is accurate, complete, and legible in source records.  A description of the 
eligibility verification process should be included in the EPIC or other Electronic Medical Record 
progress note.  
Protocol Title: 
Pilot Study of a Decision Aid Intervention for Family-building 
After Cancer 
Protocol Number: 
IRB-52143 
Principal Investigator: 
Catherine Benedict 
II.  Subject Information: 
Subject Name/ID: 
 
Gender:    
 Female  
III.  Study Information: 
SRC-approved 
 IRB-approved 
 
IV.  Inclusion/Exclusion Criteria 
Inclusion Criteria 
(From IRB-approved protocol) 
Yes 
No 
Supporting 
Documentation* 
1. Female 
 
 
Subject self-report 
2. Age 18 to 45 years old 
 
 
Chart review and/or subject 
self-report 
3. Understands verbal and written English 
 
 
Subject self-report 
4. Completed cancer treatment known to have 
gonadotoxic effects (eg, systemic 
chemotherapy, surgery affecting reproductive 
organs or hormone regulation, and/or pelvic 
radiation) 
 
 
Chart review and/or subject 
self-report 
5. Desires future children or is uncertainty about 
family-building plans 
 
 
Subject self-report 
6. Access to the Internet and use of a computer, 
tablet, or smartphone 
 
 
Subject self-report 
Exclusion Criteria 
(From IRB-approved protocol) 
 
1. Currently undergoing cancer treatment 
excluding long-term adjuvant or maintenance 
therapies, such as tamoxifen 
 
 
Chart review and/or subject 
self-report 

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2. Significant physical or mental disability that 
prevents completion of study activities 
 
 
Subject self-report and/or 
screener’s observation 
*All subject files must include supporting documentation to confirm subject eligibility.  The method 
of confirmation can include, but is not limited to, laboratory test results, radiology test results, 
subject self-report, and medical record review.  
IV.  Statement of Eligibility 
By signing this form of this trial, I verify that this subject is [
 eligible / 
 ineligible] for 
participation in the study.  This study is approved by the Stanford Cancer Institute Scientific 
Review Committee, the Stanford IRB, and has finalized financial and contractual agreements as 
required by Stanford School of Medicine’s Research Management Group.  
Principal Investigator Signature: 
Date: 
Printed Name: 
 
Secondary Reviewer Signature: 
Date: 
Printed Name: 
 
Study Coordinator Signature: 
Date: 
Printed Name: 

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APPENDIX B:  Patient Questionnaire Table of Contents 
Questionnaires are representations of the on-line questionnaires.  
Domain 
(Appendix location) 
Assessment Tool 
T1 
T2 
T3 
Background 
Questionnaires 
(Appendices C, D, E)  
Sociodemographic questions 
Medical History 
Reproductive History 
Pre-treatment Fertility Experiences 
Post-treatment Fertility Experiences 
X 
X 
X 
X 
X 
 
 
Decisional Conflict  
(Appendix F) 
Decision Conflict Scale 
X 
X 
X 
Unmet Information 
Needs 
(Appendix G) 
Investigator-designed items about fertility and 
family-building information needs 
X 
X 
X 
Cognitive, Emotional, 
and Behavioral 
Functioning 
(Appendices H, I, J) 
Illness Perceptions Questionnaire – Revised 
Reproductive Concerns after Cancer Scale 
Impact of Events Scale–Revised  
X 
X 
X 
X 
X 
X 
X 
X 
X 
Self-Efficacy 
(Appendix K) 
PROMIS General Self-Efficacy 
PROMIS Self-Efficacy for Managing Emotions 
X 
X 
X 
X 
X 
X 
Internet Use  
(Appendix L) 
e-Health Impact Questionnaire  
Part 1  
Part 2 
 
X 
 
 
 
X 
 
Financial Stress 
(Appendix M, N) 
COmprehensive Score for Financial Toxicity 
InCharge Financial Distress/Financial Well-being 
Scale  
X 
X 
 
 
Uncertainty 
Management 
(Appendix O) 
Uncertainty Management Preferences 
X 
 
 
Health Literacy 
(Appendix P, Q) 
Brief Health Literacy Screener 
Health Literacy – Young Adult 
X 
X 
 
 
Actions & 
Concomitant Care 
(Appendix R) 
Actions & Care (investigator designed) 
 
X 
X 
Website Impact 
(Appendix S, T, U) 
Stage of Decision Making 
Preparation for Decision Making 
Family-building Website Use 
X 
 
 
X 
X 
X 
X 
 
X 
Website Feedback 
(Appendix V) 
Website feedback (investigator designed) 
 
X 
 
 

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06 October 2022 
APPENDIX C:  Background Questionnaire 
 
1. 
Date of Birth:  __  /  __  /  __ 
2. With which of the following groups do you most identify?  (Select all that apply) 
 White 
 Black 
 American Indian or Alaskan Native 
 Asian or Pacific Islander 
 Other: 
 Unknown 
 Prefer not to answer 
3. Are you Hispanic/Latina? 
 No 
 Yes 
 Prefer not to answer 
4. With which of the following religious groups do you most identify? 
 Christian, Catholic 
 Christian, all other denominations 
 Jewish, Orthodox 
 Jewish, Non-Orthodox 
 Muslim 
 Buddhist 
 Hindu 
 Other world religions 
 Other faiths 
 Not affiliated with a formal religion 
 Don’t Know/Refused 
5. What is the highest level of education you have completed? 
 Some high school, but no degree 
 High school degree 
 Vocational training after high school, other than college 
 Some college, but no degree 
 College degree 
 Post-graduate degree 
 Prefer not to answer 
6. Which of the following best describes your current student status? 
 I am a full-time student 
 I am a part-time student 
 I am not enrolled in school 
 Prefer not to answer  

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06 October 2022 
7. Which of the following best describes your current employment status? 
 I am employed full-time 
 I am employed part-time 
 I am not employed 
 Prefer not to answer 
8. Over the past year, what is the total income of the household you live in? 
 Less than $50,000 
$50,000 - $100,000 
 Greater than $100,000 
 Unknown 
 Prefer not to answer 
9. What best describes the locality or environment in which you live? 
 Urban 
 Suburban 
 Rural 
 Prefer not to answer 
 

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06 October 2022 
APPENDIX D:  Medical History 
1. Have you ever been treated for a serious medical illness(s) other than cancer (eg,  asthma, 
diabetes, hypertension, etc.) 
           No 
           Yes.   If yes, please indicate:  ________________________________________________ 
___________________________________________________________________ 
___________________________________________________________________  
2. Date of cancer diagnosis:  ___  /  ___    (MM / YY) 
3. Cancer Type: 
4. Cancer Stage:  
5. Where did you receive most of your cancer treatment?  
__ Pediatric cancer clinic 
__ Adult oncology clinic 
__ Specialized young adult or “teen” cancer clinic 
6. Date of last cancer treatment:  ____  /  ____ (MM / YY) 
7. Please circle which type(s) of treatment you had: 
Surgery 
Chemotherapy 
Radiation Treatment 
Other 
If other, what other type of treatment did you receive? _____________________________ 
________________________________________________________________________ 
8. Are you still on hormonal therapy?  
           Yes; if yes, how long are you expecting to be on hormone therapy? _____________   
           No 
9. Date of last menstrual cycle:   _____  / ____  /  ____   
10. Which of the following best describes your current menstrual periods? 
__  I have regular periods (occurring about every 26 to 35 days) and I am NOT 
taking birth control pills or female hormones 
__  I have regular periods (occurring about every 26 to 35 days) and I am taking 
birth control pills or female hormones 
__  My periods are irregular (differing number of days between periods) 
__  I have not had a period for at least 12 months.  
 
I stopped getting my menstrual periods at age ______________   
__  I am currently pregnant or my last pregnancy ended within the past 6 months.  

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06 October 2022 
APPENDIX E:  Reproductive History 
1. Do you currently have children? 
 __ Yes; if yes, how many?    ____       
 __ No 
2. Did you have any children before beginning cancer treatment? 
 __ Yes – conceived naturally; if yes, how many?  ________         
 __ Yes – through fertility treatment (for example, IVF)  .  
 __ Yes – adopted or fostered 
 __ No 
3. Do you want to have children (or more children) at some time in the future? 
 __ Yes 
 __ No.  Contact study team or Dr Benedict 
 __ Unsure 
4. When would you hope to have a child in the future? 
__ I do not want to have a child (or more children) 
__ I am not sure if I want to have a child (or more children) 
__ I am currently trying to get pregnant 
__ I am currently trying to adopt or find a surrogate 
__ Probably in the next 2 years 
__ Probably in the next 2 to 5 years 
__ Probably more than 5 years from now 
5. Do you believe that your cancer treatment affected your fertility (your ability to conceive or 
have children naturally)? 
__ I believe it definitely affected my fertility 
__ I believe it probably affected my fertility 
__ I do not know 
__ I believe it probably did NOT affect my fertility 
__ I believe it definitely did NOT affect my fertility 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
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06 October 2022 
APPENDIX E Reproductive History  
Pre-treatment Fertility Experience 
Before you started cancer treatment… 
6. Did your oncologist, nurse, or other healthcare professional discuss fertility with you? 
__ Yes 
__ No 
__ I don’t remember 
7. Do you feel that you were well informed about the option to potentially preserve your fertility 
by freezing eggs or embryos before treatment? 
__ I was satisfied with the amount of information 
__ I was not satisfied – I did not receive enough information 
__ I was not satisfied – it was not discussed at all 
__ I was not interested in receiving this information, or it was not applicable to me 
8. Did you meet with a fertility specialist or reproductive endocrinologist before starting 
treatment? 
__ Yes, I met with a fertility specialist or reproductive endocrinologist (but have not 
pursued fertility preservation) 
__ No, I did NOT meet with a fertility specialist or reproductive endocrinologist even, even 
though I was referred to one 
__ No, I did NOT meet with a fertility specialist or reproductive endocrinologist because I 
did not know about this or was not referred 
__ No, I did NOT meet with a fertility specialist or reproductive endocrinologist 
because I was not interested in fertility preservation 
__ I don’t remember 
Did you undergo fertility preservation before starting your cancer treatment?  
 Yes 
 No 
 Prefer not to answer 
If Yes, what did you do? Check all that apply  
 Egg freezing 
 Embryo freezing 
 Ovarian tissue freezing 
 Ovarian transposition 
 Ovarian suppression 
 Other type of fertility preservation:  _________ 

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06 October 2022 
APPENDIX E, Reproductive History  
Post-treatment Follow-up Care 
After you finished your cancer treatment… 
9. Has your oncologist or other health care professional discussed fertility with you during your 
follow-up care? 
__ Yes, I was satisfied with the amount of information I received 
__ Yes, but I was NOT satisfied with the amount of information I received 
__ No, it was not discussed at all 
__ No, I was not interested in receiving this information, or it was not applicable to me 
__ I don’t remember 
10. Has your oncologist or other health care professional discussed risk for infertility or premature 
menopause with you during your follow-up care? 
__ Yes, I was satisfied with the amount of information I received 
__ Yes, but I was NOT satisfied with the amount of information I received 
__ No, it was not discussed at all 
__ No, I was not interested in receiving this information, or it was not applicable to me 
__ I don’t remember 
11. Has your oncologist or other health care professional discussed fertility preservation or 
alternative family-building options (such as adoption) with you during your follow-up care? 
__ Yes, I was satisfied with the amount of information I received 
__ Yes, but I was NOT satisfied with the amount of information I received 
__ No, it was not discussed at all, but I wish it had been 
__ No, I was not interested in receiving this information, or it was not applicable to me 
__ I don’t remember 
12. Have you been referred to a fertility specialist or reproductive endocrinologist since your 
treatment ended? 
__ Yes, I was referred and I have met with a fertility specialist or reproductive 
endocrinologist (but have not pursued fertility preservation) 
__ Yes, I was referred but I have NOT met with a fertility specialist or reproductive 
endocrinologist 
__ No, I was not referred, but I am interested in this 
__ No, I was not referred, but I pursued it on my own 
__ No, I was not referred and I am NOT interested in this 
__ I don’t remember or am unsure.  

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13. Have you met with a fertility specialist or reproductive endocrinologist since your treatment 
ended? 
__ Yes 
__ No 
A fertility evaluation is generally done by a reproductive endocrinologist, a gynecologist who 
specializes in fertility.  Blood is drawn to measure fertility hormone levels and an ultrasound is 
done so the doctor can see your ovaries.  
14. Have you undergone a fertility evaluation with a reproductive specialist since your cancer 
treatment ended? 
__ Yes         go to Question 35 
__ No           go to Question 34 
__ Unsure    go to Question 34 
__ Prefer not to answer   go to Question 34 
15. Have you considered having a fertility evaluation and/or undergoing fertility preservation in the 
future? 
__ Yes – I have decided to do this / have done this already 
__ Yes – I am thinking about doing this 
__ No – I have not thought about doing this 
__ Prefer not to answer 
16. Have you undergone fertility preservation since completing your cancer treatment?  
 Yes 
 No 
 Prefer not to answer 
If Yes, what did you do? Check all that apply  
 Egg freezing  
 Embryo freezing  
 Other type of fertility preservation:  ____________ 
17. Have you been told that you will not be able to get pregnant or carry a pregnancy because of 
your cancer treatment? 
__ Yes 
__ No 
__ I don’t remember / I’m not sure 
__ Prefer not to answer 

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06 October 2022 
APPENDIX F:  Decision Conflict Scale 
Cancer treatments sometimes impact fertility and may change the options you have for having a 
child.  
Family-building after cancer may require assisted reproductive technology, such as in vitro 
fertilization (IVF), surrogacy, or adoption.  
The decision of how you want to pursue family-building can be difficult to think about.  There are 
often “pros” or positive aspects (benefits) of pursuing one option over another, as well as “cons” or 
negative aspects (sometimes thought of as risks or side effects).  
We would like to know how you feel about the decision of whether or not to undergo fertility 
preservation in the future. 
 
Strongly 
disagree 
Somewhat 
disagree 
Neither 
disagree, 
nor agree 
Somewhat 
agree 
Strongly 
agree 
1. I know which options are available to me. 
    
 
 
 
 
2. I know the benefits of each option. 
    
 
 
 
 
3. I know the risks and side effects of each 
option. 
    
 
 
 
 
4. I am clear about which benefits matter most 
to me. 
    
 
 
 
 
5. I am clear about which risks and side 
effects matter most to me. 
    
 
 
 
 
6. I am clear about which is more important to 
me (the benefits or the risks and side 
effects). 
    
 
 
 
 
7. I have enough support from others to make 
a choice. 
    
 
 
 
 
8. I am choosing without pressure from 
others. 
    
 
 
 
 
9. I have enough advice to make a choice. 
    
 
 
 
 
10. I am clear about the best choice for me. 
    
 
 
 
 
11. I feel sure about what to choose. 
    
 
 
 
 
12. This decision is easy for me to make. 
    
 
 
 
 
13. I feel I have made (or could make) an 
informed choice. 
    
 
 
 
 
My decision shows (or would show) what is 
important to me.  
    
 
 
 
 
14. I expect to stick with my decision.  
 NA – I have not made a decision. 
    
 
 
 
 
15. I am satisfied with my decision.  
 NA – I have not made a decision. 
    
 
 
 
 

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06 October 2022 
Appendix G.  Unmet Information Needs 
Many cancer survivors want information about their fertility.  Do you feel you have as much 
information as you want about the topics below? 
 
 
 
 
      Not 
Prefer not 
 
 
Yes 
No 
Interested 
to answer 
1. My risk of infertility 
___ 
___ 
 
___ 
 
 ___ 
2. My risk of early menopause 
___ 
___ 
 
___ 
 
___ 
3. Options to assess my fertility status 
___ 
___ 
 
___ 
 
___ 
4. Option to preserve my fertility 
___ 
___ 
 
___ 
 
___ 
5. Other options to build a family if I am not fertile ___ 
___ 
 
___ 
 
___ 
 

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06 October 2022 
APPENDIX H:  Illness Perceptions Questionnaire (revised) 
[questions will be adapted for YA-Fs’ with a confirmed infertility diagnosis vs infertility risk] 
 
We are interested in your own personal views of your fertility and reproductive health.  Please 
indicate how much you agree or disagree with the following statements by ticking the appropriate 
box.  
These questions refer to your possible risk for fertility problems, infertility, or premature 
menopause because of the cancer treatment you received.  
This is NOT based on your individual risk and does NOT mean that you have or will have 
fertility problems in the future. 
 
Strongly 
Disagree Disagree 
Neither 
Disagree or 
Agree 
Agree 
Strongly 
Agree 
1. My fertility is a serious problem. 
 
 
 
 
 
2. Problems related to my fertility have 
major consequences on my life. 
 
 
 
 
 
3. Problems with my fertility do not have 
much effect on my life. 
 
 
 
 
 
4. Problems with my fertility strongly 
affect the way others see me. 
 
 
 
 
 
5. Problems related to my fertility and/or 
family-building have (or will have) 
serious financial consequences. 
 
 
 
 
 
6. Problems related to my fertility and/or 
family-building cause difficulties for 
those who are close to me. 
 
 
 
 
 
7. There is a lot which I can do to control  
problems related to my fertility and/or 
family-building. 
 
 
 
 
 
8. What I do can determine whether my 
fertility and/or family-building 
problems get better or worse. 
 
 
 
 
 
9. Whether or not I experience problems 
related to my fertility and/or family-
building depends on me. 
 
 
 
 
 

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06 October 2022 
10. Nothing I do will affect the problems I 
experience (or may experience) 
related to my fertility and/or family-
building. 
 
 
 
 
 
11. I have the power to influence any 
problems that I experience (or may 
experience) with my fertility and/or 
family-building. 
 
 
 
 
 
12. My actions will have no effect on my 
fertility and/or family-building. 
 
 
 
 
 
13. There is very little that can be done to 
improve my fertility  and/or family-
building. 
 
 
 
 
 
14. There are treatments that will be 
effective in curing any fertility 
problems that I might have now or in 
the future. 
 
 
 
 
 
15. The negative effects of any fertility 
problems I experience now or in the 
future can be prevented (avoided) by 
treatments. 
 
 
 
 
 
16. There are treatments that can address 
any fertility problems that I might 
experience. 
 
 
 
 
 
17. If I experience fertility and/or family-
building problems, there is nothing 
that can help. 
 
 
 
 
 
18. The symptoms of fertility problems are 
puzzling to me. 
 
 
 
 
 
19. My fertility is a mystery to me. 
 
 
 
 
 
20. I don’t understand my fertility or the 
problems I might have now or in the 
future. 
 
 
 
 
 

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06 October 2022 
21. My fertility doesn’t make any sense to 
me. 
 
 
 
 
 
22. There is nothing that can help my risk 
for experiencing fertility and/or family-
building problems. 
 
 
 
 
 
23. I get depressed when I think about my 
fertility and/or family-building. 
 
 
 
 
 
24. When I think about my fertility I get 
upset. 
 
 
 
 
 
25. My fertility makes me feel angry. 
 
 
 
 
 
26. My fertility does not worry me. 
 
 
 
 
 
27. The possibility that I might have 
fertility and/or family-building 
problems makes me feel anxious. 
 
 
 
 
 
28. I feel afraid when I think about my 
fertility and/or family-building 
problems . 
 
 
 
 
 
 

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06 October 2022 
APPENDIX I:  Reproductive Concerns after Cancer (RCAC) Scale 
Thinking about how you feel right now about having (more) biological children someday, please 
circle whether you strongly disagree, somewhat disagree, neither agree nor disagree, somewhat 
agree, or strongly agree with each statement.  If you feel that a statement does not apply to you, 
please select “Neither Agree nor Disagree”. 
 
Strongly 
disagree 
Somewhat 
disagree 
Neither 
disagree, 
nor agree 
Somewhat 
agree 
Strongly 
agree 
1. I am afraid I won’t be able to have any (more) 
children.   
    
 
 
 
 
2. I am worried about passing on a genetic risk 
for cancer to my children. 
    
 
 
 
 
3. I worry about telling my (potential) 
spouse/partner that I may be unable to have 
children. 
    
 
 
 
 
4. I am scared of not being around to take care 
of my children someday. 
    
 
 
 
 
5. I can accept it if I’m unable to have (more) 
children. 
    
 
 
 
 
6. I am overwhelmed by the thought of trying to 
get pregnant (again). 
    
 
 
 
 
7. I am concerned that my (potential) 
spouse/partner will be disappointed if I can’t 
get pregnant. 
    
 
 
 
 
8. I am worried about my ability to get pregnant 
(again). 
    
 
 
 
 
9. I am worried about how my family history 
might affect my children’s health. 
    
 
 
 
 
10. I will be happy with life whether or not I have 
(more) children someday. 
    
 
 
 
 

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06 October 2022 
 
Strongly 
disagree 
Somewhat 
disagree 
Neither 
disagree, 
nor agree 
Somewhat 
agree 
Strongly 
agree 
11. Having (more) children will make me more 
nervous about getting cancer again. 
    
 
 
 
 
12. I worry that getting pregnant (again) would 
take too much time and effort. 
    
 
 
 
 
13. I am cautious about having (more) children 
because I might not be around to raise them. 
    
 
 
 
 
14. It is stressful to think about trying to get 
pregnant (again). 
    
 
 
 
 
15. I will feel content if I do not have (more) 
children. 
    
 
 
 
 
16. The thought of telling my (potential) 
spouse/partner that I may be unable to have 
children makes me uncomfortable. 
    
 
 
 
 
17. I am concerned that I may not be able to have 
(more) children. 
    
 
 
 
 
18. I am afraid my children would have a high 
chance of getting cancer. 
    
 
 
 
 
 

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06 October 2022 
APPENDIX J:  Impact of Events Scale (revised)* 
Below is a list of difficulties people sometimes have after stressful life events.  Please indicate how 
distressing each difficulty has been for you.  Please answer in regards to your feelings DURING 
THE PAST SEVEN DAYS.  
Please answer with respect to your fertility and possible risk for experiencing problems 
with family-building. 
 
Not at 
all 
A little 
bit 
Moderately 
Quite a 
bit 
Extremely 
1. 
Any reminder brought back feelings about it. 
0 
1 
2 
3 
4 
2. 
I had trouble staying asleep. 
0 
1 
2 
3 
4 
3. 
Other things kept making me think about it. 
0 
1 
2 
3 
4 
4. 
I felt irritable and angry. 
0 
1 
2 
3 
4 
6. 
I thought about it when I didn’t mean to. 
0 
1 
2 
3 
4 
9. 
Pictures about it popped into my mind. 
0 
1 
2 
3 
4 
10. I was jumpy and easily startled. 
0 
1 
2 
3 
4 
14. I found myself acting or feeling as though I 
was back at that time. 
0 
1 
2 
3 
4 
15. I had trouble falling asleep. 
0 
1 
2 
3 
4 
16. I had waves of strong feelings about it. 
0 
1 
2 
3 
4 
18. I had trouble concentrating. 
0 
1 
2 
3 
4 
19. Reminders of it caused me to have physical 
reactions, such as sweating, trouble 
breathing, nausea, or a pounding heart. 
0 
1 
2 
3 
4 
20. I had dreams about it. 
0 
1 
2 
3 
4 
22. I tried not to talk about it. 
0 
1 
2 
3 
4 
*Only the Intrusive Thoughts and Avoidance subscales of the IES-R are included.  
 

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06 October 2022 
APPENDIX K:  PROMIS Self Efficacy 
General Self Efficacy 
Please respond to each item by marking one box per row.  
For the next set of questions, please read each sentence and rate your level of confidence in 
managing various situations, problems, and events. 
Rate your level of confidence. 
I am not  
at all 
confident (1) 
I am a little 
confident (2) 
I am somewhat 
confident (3) 
I am quite 
confident (4) 
I am very 
confident (5) 
1. I can manage to solve 
difficult problems if I try 
hard enough. 
 
 
 
 
 
2. I am confident that I could 
deal efficiently with 
unexpected events. 
 
 
 
 
 
3. If I am in trouble, I can 
think of a solution. 
 
 
 
 
 
4. I can handle whatever 
comes my way. 
 
 
 
 
 
Now, thinking about your emotions related to your fertility and family-building, please 
respond to each question or statement by marking one box per row.  
Rate your level of confidence 
about your emotions  
related to your fertility and 
family-building. 
I am not  
at all 
confident (1) 
I am a little 
confident (2) 
I am somewhat 
confident (3) 
I am quite 
confident (4) 
I am very 
confident (5) 
1. I can manage to solve 
difficult problems related 
to my fertility and/or 
family-building. 
 
 
 
 
 
2. I am confident that I could 
deal efficiently with 
unexpected events related 
to my fertility and/or 
family-building. 
 
 
 
 
 
3. If I am in trouble, I can 
think of a solution. 
 
 
 
 
 
4. I can handle whatever 
comes my way related to 
 
 
 
 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 41 of 56 
06 October 2022 
my fertility and/or family-
building. 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 42 of 56 
06 October 2022 
APPENDIX K:  PROMIS Self Efficacy 
Self-Efficacy – Managing Emotions 
Please respond to each question or statement by marking one box per row. 
Rate your CURRENT level of 
confidence…. 
I am not  
at all 
confident (1) 
I am a little 
confident (2) 
I am somewhat 
confident (3) 
I am quite 
confident (4) 
I am very 
confident (5) 
1. I can handle negative 
feelings. 
 
 
 
 
 
2. I can find ways to manage 
stress. 
 
 
 
 
 
3. I can avoid feeling 
discouraged. 
 
 
 
 
 
4. I can bounce back from 
disappointment. 
 
 
 
 
 
Now, thinking about your emotions related to your fertility and family-building, please 
respond to each question or statement by marking one box per row.  
Rate your level of confidence 
about your emotions  
related to your fertility and 
family-building. 
I am not  
at all 
confident (1) 
I am a little 
confident (2) 
I am somewhat 
confident (3) 
I am quite 
confident (4) 
I am very 
confident (5) 
1. I can handle negative 
feelings related to my 
fertility and/or family-
building. 
 
 
 
 
 
2. I can find ways to manage 
stress related to my 
fertility and/or family-
building. 
 
 
 
 
 
3. I can avoid feeling 
discouraged related to my 
fertility and/or family-
building. 
 
 
 
 
 
4. I can bounce back from 
disappointment related to 
my fertility and/or family-
building. 
 
 
 
 
 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 43 of 56 
06 October 2022 
APPENDIX L:  eHealth Impact Questionnaire (eHIQ) Part 1 and Part 2  
eHealth Impact Questionnaire, Part 1 (T1 only) 
We would like to get an understanding of how you think and feel about receiving online health 
information and sharing your health experiences through online platforms.  
Response options:    
1= Strongly disagree 
2= Disagree 
3= Neither agree nor disagree 
4= Agree 
5= Strongly agree 
Scale 
Items 
1 to 5 
Attitudes 
towards online 
health 
information 
(5 items) 
1. The internet is a reliable resource to help me understand what a 
doctor tells me. 
 
2. The internet can help the public to know what it is like to live with a 
health problem. 
 
3. The internet can be useful to help people decide if their symptoms 
are important enough to go to see a doctor. 
 
4. I would use the internet if I needed help to make a decision about my 
health (for example, whether I should see a doctor, take medication 
or seek other types of treatment). 
 
5. I would use the internet to check that the doctor is giving me 
appropriate advice. 
 
Attitudes 
towards 
sharing health 
experiences 
online 
(6 items) 
6. The internet is a good way of finding other people who are 
experiencing similar health problems. 
 
7. It can be helpful to see other people’s health-related experiences on 
the internet. 
 
8. The internet is useful if you don’t want to tell people around you (for 
example, your family or people at work) how you feel. 
 
 
9. It can be reassuring to know that I can access health-related 
websites at any time of the day or night. 
 
10. The internet is a good way of finding other people who are facing 
health-related decisions I may also face. 
 
11. Looking at health-related websites reassures me that I am not alone 
with my health concerns. 
 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 44 of 56 
06 October 2022 
APPENDIX L:  eHealth Impact Questionnaire, Part 2 (T2 and T3 only) 
Next, we’d like to ask you some questions about the decision aid and planning tool you viewed.  
Please answer as honestly as possible, as we would like to learn what you liked and disliked 
about the website and how to make it better (2 pages).  
Response options:    
1= Strongly disagree 
2= Disagree 
3= Neither agree nor disagree 
4= Agree 
5= Strongly agree 
Scale 
Items 
1 to 5 
Confidence 
and 
identification 
(9 items) 
1. The website prepares me for what might happen related to my fertility 
and family-building. 
 
2. The people who have contributed to the website understand what is 
important to me. 
 
3. I feel I have a sense of solidarity with other people using the website.  
4. I can identify with other people using the website. 
 
5. I value the advice given on the website. 
 
6. The website gives me confidence that I am able to manage what my 
happen related to family-building. 
 
7. I feel I have a lot in common with other people using the website. 
 
8. The website gives me the confidence to explain my concerns to 
others. 
 
9. The website makes me more confident to discuss fertility and family-
building issues with the people around me (for example, my family or 
people at work). 
 
Information 
and 
presentation 
(8 items) 
10. The information on the website left me feeling confused. 
 
11. The website provides a wide range of information. 
 
12. The language on the website made it easy to understand. 
 
13. I can easily understand the information on the website. 
 
14. I trust the information on the website. 
 
15. Photographs and other images were used appropriately on the 
website. 
 
16. I found the images on the website distressing. 
 
17. The website is easy to use. 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 45 of 56 
06 October 2022 
Scale 
Items 
1 to 5 
Understanding 
and Motivation 
(9 items) 
18. The website encourages me to take actions that could be beneficial 
to my health. 
 
19. The website has a positive outlook. 
 
20. The website includes useful tips on how to make life better. 
 
21. I feel more inclined to look after myself after visiting the website. 
 
22. I have learnt something new from the website. 
 
23. I would consult the website if I had to make a decision about family-
building. 
 
24. On the whole, I find the website reassuring. 
 
25. The website helps me to have a better understanding of my family-
building options. 
 
26. The website encourages me to play a more active role in my 
healthcare and family-building decisions. 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 46 of 56 
06 October 2022 
APPENDIX M:  COmprehensive Score for financial Toxicity (COST) 
Below is a list of statements that other people have said are important.  Please circle a number to 
indicate your response as it applies to the past 7 days. 
 
Not at all A little bit 
Some-
what 
Quite      
a bit 
Very 
much 
1.  I know that I have enough money in savings, 
retirement, or assets to cover the costs of my 
treatment. 
0 
1 
2 
3 
4 
2.  My out-of-pocket medical expenses are more than I 
thought they would be.   
0 
1 
2 
3 
4 
3.  I worry about the financial problems I will have in 
the future as a result of my illness or treatment. 
0 
1 
2 
3 
4 
4.  I feel I have no choice about the amount of money I 
spend on care. 
0 
1 
2 
3 
4 
5.  I am frustrated that I cannot work or contribute as 
much as I usually do.   
0 
1 
2 
3 
4 
6.  I am satisfied with my current financial situation. 
0 
1 
2 
3 
4 
7.  I am able to meet my monthly expenses. 
0 
1 
2 
3 
4 
8.  I feel financial stressed. 
0 
1 
2 
3 
4 
9.  I am concerned about keeping my job and income, 
including work at home. 
0 
1 
2 
3 
4 
10.  My cancer or treatment has reduced my 
satisfaction with my present financial situation. 
0 
1 
2 
3 
4 
11.  I feel in control of my financial situation. 
0 
1 
2 
3 
4 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 47 of 56 
06 October 2022 
APPENDIX N:  InCharge Financial Distress/Financial Well-being Scale 
 
Directions:  Circle or check the responses that are most appropriate for your situation.  
1.  What do you feel is the level of your financial stress today? 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
Overwhelming  
Stress 
High  
Stress 
 
Low  
Stress 
 
No Stress  
at All 
 
2.  On the stair steps below, mark (with a circle) how satisfied you are with your present financial 
situation.  The “1” at the bottom of the steps represents complete dissatisfaction.  The “10” at the 
top of the stair steps represents complete satisfaction.  The more dissatisfied you are, the lower 
the number you should circle.  The more satisfied you are, the higher the number you should 
circle.  
 
 
3.  How do you feel about your current financial situation? 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
Feel  
Overwhelmed 
Sometimes  
Feel Worried 
 
Not 
Worried 
 
Feel  
Comfortable 
 
4.  How often do you worry about being able to meet normal monthly living expenses? 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
Worry  
All the Time 
Sometimes  
Worry 
 
Rarely 
Worry  
 
Never  
Worry 
 
5.  How confident are you that you could find the money to pay for a financial emergency that 
costs about $1,000? 
 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
No 
Confidence 
Little  
Confidence 
 
Some  
Confidence  
 
High 
Confidence 
 
10 
9
8
7
6
5
4
3
2
1 
Dissatisfied 
Satisfied 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 48 of 56 
06 October 2022 
6.  How often does this happen to you? You want to go out to eat, go to a movie or do something 
else and don’t go because you can’t afford to? 
 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
All the time 
Sometimes 
 
Rarely 
 
Never 
 
7.  How frequently do you find yourself just getting by financially and living paycheck to 
paycheck? 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
All the time 
Sometimes 
 
Rarely 
 
Never 
 
8.  How stressed do you feel about your personal finances in general? 
1 
2 
3 
4 
5 
6 
7 
8 
9 
10 
Overwhelming 
Stress 
High 
Stress 
 
Low  
Stress 
 
No Stress  
at All 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 49 of 56 
06 October 2022 
APPENDIX O:  Uncertainty Management Preferences 
 
Strongly                                   Strongly   
  agree ………………………….disagree 
Preference to maintain uncertainty through avoidance 
I tend to AVOID information about my fertility or any family-building 
problems because…  
1 
2 
3 
4 
5 
6 
7 
1. It can be depressing. 
1 
2 
3 
4 
5 
6 
7 
2. I get anxious when I think about it. 
1 
2 
3 
4 
5 
6 
7 
3. Being constantly reminded of it makes me nervous. 
1 
2 
3 
4 
5 
6 
7 
4. It can be scary to think about. 
1 
2 
3 
4 
5 
6 
7 
Preference to avoid insufficient information 
I tend to AVOID information about my fertility and/or family-building 
problems because… 
1 
2 
3 
4 
5 
6 
7 
5. There’s a lot of misinformation out there, so it’s difficult to 
know which is truthful.  
6. The recommendations are always changing. 
1 
2 
3 
4 
5 
6 
7 
7. The amount of information out there can be overwhelming. 
1 
2 
3 
4 
5 
6 
7 
Preference to increase uncertainty 
I tend to SEEK OUT information about my fertility and/or family-
building options because… 
1 
2 
3 
4 
5 
6 
7 
8. I want to get a second opinion. 
1 
2 
3 
4 
5 
6 
7 
9. New information can give me hope. 
1 
2 
3 
4 
5 
6 
7 
10. Finding new information helps me check what my doctor told 
me. 
1 
2 
3 
4 
5 
6 
7 
Preference to reduce uncertainty 
I tend to SEEK OUT information about my fertility and/or family-
building options because…  
1 
2 
3 
4 
5 
6 
7 
11. It’s good to be prepared. 
1 
2 
3 
4 
5 
6 
7 
12. It makes me feel equipped to handle difficult situations. 
1 
2 
3 
4 
5 
6 
7 
13. It makes me less fearful. 
1 
2 
3 
4 
5 
6 
7 
14. I try to find all kinds of information I can. 
1 
2 
3 
4 
5 
6 
7 
15. Being knowledgeable can be helpful. 
1 
2 
3 
4 
5 
6 
7 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 50 of 56 
06 October 2022 
APPENDIX P:  Brief Health Literacy Screener 
 
1. How often do you have problems learning about your medical condition because of 
difficulty understanding written information?  
 
(1) Always 
(2) Often 
(3) Sometimes 
(4) Occasionally  
(5) Never 
 
 
2. How often do you feel confident filling out medical forms by yourself? 
 
(1) Always 
(2) Often 
(3) Sometimes 
(4) Occasionally  
(5) Never 
 
 
3. How often do you have someone (like a family member, friend, hospital/clinic worker, or 
caregivers) help you read hospital materials? 
 
(1) Always 
(2) Often 
(3) Sometimes 
(4) Occasionally  
(5) Never 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 51 of 56 
06 October 2022 
APPENDIX Q:  Health Literacy Screening Questionnaire (HL-SQ) 
 
How well do you understand the following information?  
1. … instruction leaflets for medication? 
(1) Not at all well 
(2) Slightly well    
(3) Moderately well  
(4) Very well   
(5) Extremely well  
__ I do not make use of this kind of information 
2. … information brochures on health issues? 
(1) Not at all well 
(2) Slightly well    
(3) Moderately well  
(4) Very well   
(5) Extremely well  
__ I do not make use of this kind of information 
3. When I have questions on diseases or complaints, I know where I can find information 
on these issues.  
(1) Disagree strongly   
(2) Disagree    
(3) Agree   
(4) Agree strongly  
__ I do not have experience with these issues  
4. When I want to do something for my health, I know where I can find information on 
these issues.  
(1) Disagree strongly   
(2) Disagree    
(3) Agree   
(4) Agree strongly  
__ I do not have experience with these issues  
5. How often are you able to help your family members or a friend if they had questions 
concerning health issues (e.g.  stress, minor sport injuries, or nutrition)? 
(1) Never  (2) Seldom  
(3) Sometimes  
(4) Often  
(5) Always  
__ There have never been any questions  
6. If you have questions about health issues, how often are you able to get information 
and advice from others (family and friends)? 
(1) Never  (2) Seldom  
(3) Sometimes  
(4) Often  
(5) Always  
__ There have never been any questions  
7. How well can you choose health advice that meets your needs? 
(1) Very bad 
(2) Bad   
(3) Moderate  
(4) Good  
(5) Very good  
__ I do not make use of this kind of information 
8. Regarding health information on the Internet, I'm able to determine which sources are 
of high quality and which of poor quality?    
(1) Disagree strongly   
(2) Disagree    
(3) Agree   
(4) Agree strongly  
__ I do not have experience with these issues  

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 52 of 56 
06 October 2022 
APPENDIX R:  Actions & Concomitant Care (T2 and T3 only) 
These questions ask about what actions or “next steps”, if any, you have taken related to fertility 
and family-building.  
1. To what extent did the website prompt you to consider your family-building decisions? 
Not at all 
A little bit 
A moderate amount 
Very much 
Extremely 
2. To what extent did the website prompt you to take “next steps” toward planning for future 
family-building? 
Not at all 
A little bit 
A moderate amount 
Very much 
Extremely 
In the past month/past two months [T2 and T3, respectively], have you…  
3. Sought guidance from your oncologist or member of your cancer care team related to your 
fertility and family-building options, such as having an office visit (or scheduling one)? 
Yes       If Yes, what did you do? ________________________________ 
No         If No, why not?               ________________________________ 
N/A 
4. Sought guidance from a fertility specialist related to your fertility and family-building options, 
such as having an office visit (or scheduling one)?  
Yes       If Yes, what did you do? ________________________________ 
No         If No, why not?               ________________________________ 
N/A 
5. Taken steps to learn more about, or plan for, the cost of family-building options? 
Yes       If Yes, what did you do? ________________________________ 
No         If No, why not?               ________________________________ 
N/A 
6. Connected with family, friends, or peers for help, support, or guidance related to family-building 
concerns? 
Yes       If Yes, what did you do? ________________________________ 
No         If No, why not?               ________________________________ 
N/A 
7. Talked to your partner about family-building options?  
Yes       If Yes, what did you do? ________________________________ 
No         If No, why not?               ________________________________ 
N/A 
8. Did the website prompt any other action related to your fertility and family-building? ________ 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 53 of 56 
06 October 2022 
APPENDIX S:  Family-building Website Use (T2 and T3 only) 
 
1. Did you access the “Roadmap to Parenthood” website (www.familybuildingaftercancer.com)?  
Yes / No 
2. How many times did you access the website?  
[number drop down] 
3. About how long did you spend on the website the first time you used it?  
[number drop down] minutes 
4. About how much time have you spent using the website in total?  
[number drop down] minutes 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 54 of 56 
06 October 2022 
APPENDIX T:  Stage of Decision-making 
 
People who are interested in having a child after cancer may consider multiple options for 
family-building.  
 
At this time, would you say you: 
__ haven’t begun to think about the choices (1) 
__ haven’t begun to think about the choices, but am interested in doing so (2) 
__ are considering the options now (3) 
__ are close to selecting an option (4) 
__ have already made a decision, but am still willing to reconsider (5) 
__ have already made a decision and am unlikely to change my mind (6) 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 55 of 56 
06 October 2022 
APPENDIX U:  Preparation for Decision Making (T2 only)  
Did you visit the Roadmap to Parenthood website? Yes/ No (if No, SKIP measure) 
Did the website… 
Not at 
all 
A little 
bit 
Some-
what 
Quite 
a bit 
A great 
deal 
1. Help you understand that a decision needs to be 
made about family-building options (at some point, 
even if in the future)? 
1 
2 
3 
4 
5 
2. Prepare you to make a better decision?  
1 
2 
3 
4 
5 
3. Help you think about the pros and cons of each 
option? 
1 
2 
3 
4 
5 
4. Help you think about which pros and cons are most 
important? 
1 
2 
3 
4 
5 
5. Help you know that the decision depends on what 
matters most to you?  
1 
2 
3 
4 
5 
6. Help you organize your own thoughts about the 
decision? 
1 
2 
3 
4 
5 
7. Help you think about how involved you want to be 
in this decision? 
1 
2 
3 
4 
5 
8. Help you identify questions you want to ask your 
doctor*? 
 
*oncologist, fertility specialist, or any other doctor 
you would discuss fertility and family-building with 
1 
2 
3 
4 
5 
9. Prepare you to talk to your doctor* about what 
matters most to you? 
 
*oncologist, fertility specialist, or any other doctor 
you would discuss fertility and family-building with 
1 
2 
3 
4 
5 
10. Prepare you for a follow-up visit with your doctor*? 
 
*oncologist, fertility specialist, or any other doctor 
you would discuss fertility and family-building with 
1 
2 
3 
4 
5 
 

Pilot Study of a Decision Aid Intervention for Family-building After Cancer  
IRB-52143 
Page 56 of 56 
06 October 2022 
APPENDIX V:  Website Feedback (T2 only) 
1. What is your overall impression of the website? 
2. What did you like best about the website? 
3. What did you like least about the website? 
4. Is there anything that you feel is missing or could have been done better on the website? 
 
Very 
unlikely 
Unlikely Undecided 
Likely Very 
Likely 
5. How likely are you to recommend the 
website to a friend?  
 
 
 
 
 
 
6. In the future, what is the likelihood that 
you would use the website again? 
 
 
 
 
 
7. Do you have any other final comments or suggestions about the website?