Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing

Abstract

Background Owing to gonadotoxic cancer treatments, young adult female survivors often report uncertainty about their fertility, reproductive potential, and family-building options after treatment. Roadmap to Parenthood is a web-based decision aid and planning tool for family building after cancer. Objective As part of a patient-centered development process, this study evaluated the usability of the decision aid website to inform design modifications and improve user experience. Methods In total, 2 rounds of usability testing were conducted with the target population of young adult female cancer survivors. During the testing sessions, participants viewed the website twice; first, as a think-aloud exercise, and second, while a researcher interrupted at key points to obtain user feedback. Quantitative and qualitative data were collected to assess website usability. Quantitative measures included the System Usability Scale, WebQual, and eHealth Impact Questionnaire. An exit interview with open-ended questions gathered feedback on likes and dislikes and suggestions for improvement. Results Participants (N=10) were young adult women, with average age of 30.9 (SD 4.51) years, and average time since treatment was 4.44 (SD 3.56) years. Website usability scores improved on the System Usability Scale from “acceptable” in round 1 to “excellent” in round 2 after making design changes based on user feedback (scores of 68 and 89.4, respectively). WebQual scores showed similar improvement from round 1 to round 2 of testing (mean 5.6 to 6.25; range 1-7). On the eHealth Impact Questionnaire, the information and presentation of the website was perceived as comprehensive, easy to understand, and trustworthy. Participants also reported improved confidence to discuss and manage fertility and family-building issues and felt encouraged to play a more active role in managing their fertility. In all, 3 usability themes were identified from the qualitative feedback: ease of use, visibility and navigation, and informational content and usefulness. Overall feedback was positive, and participants reported intentions to use the decision aid website in the future. In total, 10% (1/10) of the participants reported negative emotions when learning about infertility risks and potential family-building challenges. Conclusions Website usability improved after design changes were made in response to user feedback. Young adult female survivors reported positive views about the website and indicated that the decision aid would be useful in decision-making about family building after cancer. Future studies will include further design modifications to consider the emotional experiences of users and any additional navigational features or content to optimize the ease of use and support provided by the tool.

Greater fertility distress and avoidance relate to poorer decision making about family building after cancer among adolescent and young adult female survivors

“…Benedict et al. developed the web‐based ‘Roadmap to Parenthood’ decision aid and planning tool for family building after cancer, 36,37 and in two pilot studies the tool led to positive effects on decision‐making outcomes as well as improved self‐efficacy for managing fertility‐related emotions (under review) 38 . Decision aids have been shown to be effective in a number of health contexts including with socially disadvantaged populations 39–41 .…”

Preliminary testing of “roadmap to parenthood” decision aid and planning tool for family building after cancer: Results of a single‐arm pilot study

“…As previously described, the web-based, interactive Roadmap to Parenthood decision aid and planning tool is for women (assigned female at birth) who have completed gonadotoxic treatment (disease-agnostic) to support future family building (Supplemental Figure S1). 17,18 It goes beyond fertility preservation to address posttreatment issues, providing general information about cancer treatment effects on fertility and family-building options via ART and adoption/fostering, though explains that natural conception (unassisted reproduction) may still be possible. It does not provide guidance based on personal medical information.…”

Effectiveness and feasibility of online fertility preservation decision aids for young female patients with cancer: a systematic review protocol

“…Some results from multiple studies demonstrated varying degrees of effectiveness and feasibility, and the sample size was relatively small, which may have led to some bias in the results. [23][24][25] There are insufficient systematic reviews that summarise the feasibility and effectiveness of online PtDAs for fertility preservation decision-making support. Thus, two primary research questions guided the systematic review: (a) What is the effectiveness of online fertility preservation decision aids in assisting patient decision-making?…”

“…Several online PtDAs for fertility preservation decisions among young female patients with cancer have been developed. Some results from multiple studies demonstrated varying degrees of effectiveness and feasibility, and the sample size was relatively small, which may have led to some bias in the results 23–25. There are insufficient systematic reviews that summarise the feasibility and effectiveness of online PtDAs for fertility preservation decision-making support.…”