JMIR Publications

ABSTRACT

Background:

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

Objective:

The goal of this study was to obtain feedback from AYACS on a mid-fidelity prototype of a depression self-management tool being tailored to AYACS.

Methods:

Individuals who had a history of cancer diagnosed at age 12 or older and who were between the ages of 15 and 39 and had completed primary treatment were identified via 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. Upon enrollment, participants provided demographic and clinical information, as well as their availability for an interview. The PI (KMI) conducted semi-structured individual interviews with consented AYACS. Most of the interview was dedicated to showing participants the mid-fidelity prototype of the tool, providing an explanation of 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. Transcriptions underwent rapid qualitative analysis guided by the Rigorous and Accelerated Data Reduction (RADaR) technique.

Results:

Fourteen AYACS (64.3% female, 64.3% 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, 71.4%) 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, 78.6%). Participant preferences captured qualitatively fell into four themes: (1) features to promote user engagement (e.g., the use of gamification); (2) tailored content presentation (e.g., authenticity in the portrayal of the cancer experience); (3) perceived usability (e.g., simplifying user input); and (4) interface design (e.g., 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 re-programming of 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.