Co-Design of a Depression Self-Management Tool for Adolescent and Young Adult Cancer Survivors: Rapid Qualitative Analysis of Interview Feedback on a Prototype.

Abstract

Background: Over 2.1 million adolescent and young adult cancer survivors (AYACS) live in the United States. Recent estimates suggest that up to one-third of AYACS experience major depressive disorder. Although several efficacious evidence-based interventions are available to manage symptoms of depression, these interventions are often inaccessible to AYACS who have many competing commitments. Digital mental health tools hold promise for this population; however, only a few have been tailored to meet the unique needs of AYACS, and findings to date have yielded mixed results.

Objective: This study aims to obtain feedback from AYACS on a mid-fidelity prototype of a depression self-management tool being tailored for AYACS.

Methods: Individuals with a history of cancer diagnosed at age 12 or older who were between the ages of 15 and 39 and had completed primary treatment were identified through a review of medical records from a comprehensive cancer center in the Southeastern United States. Potentially eligible participants were contacted by study staff to conduct additional screening and obtain informed consent via REDCap (Research Electronic Data Capture; Vanderbilt University). Upon enrollment, participants provided demographic and clinical information, as well as their availability for an interview. The principal investigator (KMI) conducted semistructured individual interviews with consented AYACS. Most of the interview was dedicated to showing participants the mid-fidelity prototype of the tool, explaining how the prototype might work, and requesting targeted feedback. Demographic and clinical characteristics, as well as some aspects of feedback on the prototype, were summarized using descriptive statistics. Interviews were audio- and video-recorded and transcribed. The transcriptions underwent rapid qualitative analysis guided by the Rigorous and Accelerated Data Reduction technique.

Results: A total of 14 AYACS (n=9, 64%, female; n=9, 64%, white; ages 15-38) completed an individual interview. Participant preferences for mood tracking, content presentation, user input, and duration of use were captured qualitatively but analyzed quantitatively. For example, most participants (n=10, 71%) indicated that they preferred a mood-tracking option that included emojis and would be willing to track their mood at least once per day (n=11, 79%). Participant preferences captured qualitatively fell into 4 themes: (1) features to promote user engagement (eg, the use of gamification); (2) tailored content presentation (eg, authenticity in the portrayal of the cancer experience); (3) perceived usability (eg, simplifying user input); and (4) interface design (eg, implementing a coherent design theme and color scheme).

Conclusions: Findings indicated that AYACS highly value personalization, flexibility, and peer support in digital interventions. Based on insights obtained during individual interviews, a working prototype was developed by reprogramming an existing digital tool. Qualitative and quantitative findings informed modifications to the existing digital tool. The working prototype will next undergo evaluation as part of a pilot full-factorial trial.