Development and Pilot Evaluation of REFLECT: A Digital Health Application Supporting Fertility and Genetic Decision-Making in Adolescent and Young Adult Oncology
Development and Pilot Evaluation of REFLECT: A Digital Health Application Supporting Fertility and Genetic Decision-Making in Adolescent and Young Adult Oncology
Purpose
Adolescent and young adult (AYA) patients with cancer face complex decisions about family building, often compounded by misconceptions about hereditary cancer risk. Although guidelines recommend early discussion of fertility- and genetics-related risks, these topics are inconsistently integrated into routine care. To address this gap, we developed Reproductive Education and Fertility Links for Cancer Treatment (REFLECT), a digital health application designed to provide education and decision support related to fertility, genetic risk, and future family building for AYAs with cancer. This study developed and pilot-tested REFLECT to support informed decision-making.
Methods
REFLECT was developed using evidence-based content and implemented on a web-based platform integrating multimedia education and decision support. Two iterative rounds of user testing were conducted with AYA survivors (ages 18–39) using a Learner Verification framework to assess comprehension, usability, relevance, and acceptability. Participant feedback informed iterative refinements.
Results
Participants (N = 16) reported that REFLECT was engaging, easy to navigate, and relevant to fertility, genetics, and future family-building concerns. Iterative testing identified opportunities to improve navigation, accessibility, and content organization, which were addressed through refinement. Participants reported increased confidence in discussing fertility preservation and genetic risk with providers and emphasized the value of an integrated patient-centered tool, particularly at the time of diagnosis.
Conclusion
This pilot demonstrates that REFLECT is feasible, acceptable, and usable among AYAs. By integrating fertility and genetic risk education with decision support in an accessible digital format, REFLECT addresses a critical gap in AYA oncology care. These findings support further evaluation in clinical settings.
Keywords
Adolescent and Young Adult (AYA) Oncology, Oncofertility Care, Family Building, Genetic Risk, Decision-Making, Digital Application
Introduction
Adolescent and young adult (AYA) patients with cancer face complex decisions related to future family-building options, often compounded by concerns of hereditary cancer risk and long-term effects of cancer treatment. Although approximately 10% of AYA cancers are hereditary, many perceive their cancer as hereditary regardless of clinical confirmation. Notably, 65% of female AYA cancer survivors reported concerns about transmitting cancer risk to future offspring, regardless of mutation status.
Recognizing these challenges, professional societies recommend early counseling regarding fertility risks, reproductive options, and referral to genetic services for patients undergoing gonadotoxic therapies. Despite these guidelines, the majority of AYA patients report not engaging in discussions regarding fertility preservation (FP) or genetic risks at diagnosis.
Psychosocial barriers further complicate addressing AYAs’ genetic risk and future family-building concerns. Uptake of genetic counseling (GC) among eligible patients remains low, with even lower rates among racial and ethnic minority populations. Common reasons for declining GC include limited knowledge of genetic risk, cost-related concerns, and fears of discrimination. Despite substantial fertility-related distress and preferences for earlier communication, discussions about fertility and genetic risk are often delayed or absent. Thus, interventions must address psychosocial barriers while optimizing the timing, format, and accessibility of education and decision support.
Psychoeducational interventions have demonstrated efficacy in bridging knowledge gaps and facilitating behavior change. Digital health applications are increasingly utilized in oncology to deliver education and support decision-making. AYA patients demonstrate a strong preference for digital formats over traditional paper-based education and show enhanced engagement with mobile and web-based technologies.
In response to these gaps, this study presents the development and preliminary evaluation of the Reproductive Education and Fertility Links for Cancer Treatment (REFLECT) digital health application, a theory-informed digital health tool designed to deliver integrated education and decision support for AYA patients with cancer. The overarching objective was to develop and iteratively refine the REFLECT application through successive rounds of user testing and to present preliminary findings on its feasibility and potential to enhance informed family-building decision-making among AYA patients with cancer.
Methods
Intervention Description
REFLECT is a web-based digital health application that provides integrated education and decision support related to FP, genetic risk, and future family building for AYA patients with cancer. The educational framework was informed by prior formative research with AYA survivors and providers examining the intersection of these domains.
Developed in partnership with Nest Genomics, REFLECT adopts their customizable, HIPAA-compliant, cloud-based platform. The Nest Platform functions as a “genetic companion,” supporting patient engagement through delivery of educational content and care-related tasks. The platform incorporates accessibility features (e.g., adjustable font size, audio content, inclusive imagery) and delivers developmentally appropriate content for clinical settings and home use.
Prior to piloting, the prototype underwent expert review by clinicians and researchers in oncology, oncofertility, and cancer genetics, with feedback informing refinements to clinical accuracy, clarity, terminology, and educational flow.
Participant Recruitment
Participants were AYA cancer survivors aged 18–39 who had received care at an NCI-designated comprehensive cancer center. Eligibility criteria included (1) history of cancer diagnosis, (2) ability to speak and read English, (3) consideration of having children in the future, and (4) access to an internet-enabled device. All participants had completed primary cancer treatment at the time of participation and reflected on their experiences with fertility- and genetics-related decision-making. Participants were recruited through institutional referral networks, AYA program listservs, and targeted outreach. All participants provided verbal informed consent. The study was approved by the Moffitt Cancer Center Scientific Review Committee and Advarra Institutional Review Board (MCC #22569).
Learner Verification Interviews
User testing was conducted using a two-round iterative design. In each round, participants interacted with REFLECT during individual semistructured interviews conducted via Zoom. Interviews were guided by a Learner Verification framework and incorporated a Concurrent Think-Aloud approach, in which participants were asked to verbalize their thoughts, reactions, and interpretations while navigating the tool in real time. Semistructured interview guides assessed key domains central to application development, including (1) comprehension and ability to process information, (2) usability and navigation, (3) relevance to personal decision-making needs, (4) accessibility and design features, and (5) overall acceptability and cultural appropriateness.
Participants were additionally encouraged to identify areas of confusion and recommendations for improvement. Round 1 participant feedback was synthesized to identify usability challenges and guide refinements in collaboration with Nest Genomics. A second group of participants then evaluated the revised version of REFLECT in Round 2 using identical procedures. This iterative process ensured that participant feedback directly informed successive refinements of the tool.
Usability was assessed using five items adapted from the System Usability Scale (SUS) at the conclusion of each interview. Participants rated each item on a 5-point Likert scale (1 = strongly disagree to 5 = strongly agree), with negatively worded items reverse-coded. Items assessed perceived ease of use, complexity, confidence using the tool, integration of features, and likelihood of future use.
Data Analysis
Qualitative data were analyzed leveraging a thematic analysis approach integrating both deductive and inductive coding. Domains were guided by learner verification constructs with additional emergent domains identified inductively. A preliminary codebook was developed through independent coding of two transcripts by two coders, followed by consensus meetings. All transcripts thereafter were double-coded, and discrepancies were resolved through discussion. Inductive themes were developed through pattern recognition across transcripts. Saturation was defined as no emergence of new themes during interim analysis. Findings were synthesized after each round to inform iterative refinement of REFLECT.
Quantitative data were analyzed descriptively. Given the adapted version of the SUS, usability data were summarized using item-level descriptives rather than a summed score.
Results
Participant Characteristics
Two independent samples participated in two rounds of user testing (Round 1, N = 10; Round 2, N = 6), for a total sample of 16 participants. Participants had a mean age of 34 years (range 26.9–39.7); were primarily female (75%), White (62.5%), and non-Hispanic (93.8%); and had completed a college degree or higher (87.5%). Cancer diagnoses included breast cancer (18.8%), lymphoma (18.8%), colorectal/rectal cancer (18.8%), thyroid cancer (12.5%), and other malignancies.
LV-Guided Qualitative Findings
Findings were consistent across rounds, with no substantively new domains emerging in Round 2. LV-guided domains and emergent themes are summarized.
- Attraction: Participants described REFLECT as engaging, visually appealing, and easy to approach. Concise text and visual design were perceived to reduce information overload.
- Comprehension: AYAs demonstrated strong comprehension of the REFLECT content. Participants highlighted the benefit of the multimedia format and opportunity for self-directed learning.
- Cultural Acceptability: Participants reported that REFLECT was culturally acceptable and respectful of personal values.
- Perceived Relevance: Participants described the tool as highly relevant to their needs related to fertility, genetics, and future family building.
- Usability: Across both rounds, REFLECT was described as user-friendly, intuitive, and easy to navigate.
- Communication Self-Efficacy: Participants reported that REFLECT supported communication self-efficacy by clarifying priorities and preparing them for conversations with providers.
- Perceived Usefulness: REFLECT was found highly useful due to its ability to consolidate fertility and genetic information that had previously been fragmented or difficult to access.
Discussion
This pilot study demonstrates that REFLECT is a feasible and acceptable digital health application for AYAs seeking information about FP, genetic risk, and future family building after a cancer diagnosis. Participants emphasized the value of integrating both domains within a single, patient-centered, digital platform. These findings suggest that REFLECT addresses a critical gap in AYA oncology care by providing structured, accessible education and decision support during a period of high informational and emotional burden.
The strong acceptability and perceived usefulness of REFLECT highlight unmet needs in timely, integrated fertility and genetic counseling among AYAs with cancer. Despite guidelines recommending early discussion of fertility risks, many AYAs report these conversations as delayed or absent. Digital health applications are increasingly recognized as tools to support patient education and decision-making in oncology. REFLECT integrates FP, genetic risk, and future family-building considerations within a single, interactive platform, emphasizing its combined approach to aid AYAs in navigating complex reproductive decisions after cancer.
Conclusion
This pilot provides early evidence that REFLECT is a feasible and acceptable digital health application for delivering integrated fertility and genetic education to AYA patients with cancer. By addressing gaps in knowledge and values-based decisional support, REFLECT may enable informed, patient-centered reproductive decision-making and guideline-concordant care.