Abstract
BACKGROUND: Allogeneic hematopoietic stem cell transplant (HCT) is a complex but essential treatment for malignant and nonmalignant conditions, requiring strict posttransplant adherence to immunosuppressant medications to prevent complications such as graft-versus-host disease. Adolescents and young adults undergoing HCT face unique challenges, including balancing growing independence with ongoing reliance on care partners, often parents. Medication adherence in this group is often suboptimal, and few interventions address adolescent and young adult-care partner dyads. To address this gap, we aim to develop a mobile health (mHealth) app that engages both the patients and care partner to improve adherence. OBJECTIVE: As formative research for early-stage intervention development, this study aimed to (1) explore current HCT medication adherence strategies and challenges; (2) understand attitudes toward digital technology, including dyadic perspectives on app use to support adherence; and (3) assess adolescent and young adult-care partner relationships, including views on care partner involvement. This process was intended to inform the design of a relevant, user-centered mHealth app. METHODS: Eligible participants included adolescents and young adult patients aged 12-39 years and primary care partners, such as parents, involved in medication management. Participants were recruited from a large academic medical center through direct outreach and electronic health records. Data collection involved 2 focus groups (6 dyads and 2 additional adolescents and young adults), 4 individual interviews (2 patients and 2 care partners), and 6 dyadic interviews. Semistructured sessions (in person or virtual) gathered feedback on medication adherence practices and app design preferences. All sessions were audio recorded with consent and professionally transcribed. Qualitative data were analyzed systematically: transcripts were deidentified, coded using both inductive and deductive strategies, and themes were refined through team consensus. Patterns were organized into major themes, and representative quotations were selected to illustrate findings. Data management was facilitated by NVivo (version 13; Lumivero) software. RESULTS: We included 28 participants (15 adolescents and young adults and 13 care partners). The median age of adolescents and young adults was 18 (range 13-39) years and 53% (8/15) were female. Adolescents and young adults were 47% (7/15) White, 40% (6/15) Black, and 13% (2/15) mixed race. Care partners' median age was 48 (range 36-72) years, with 92% (12/13) female and 77% (10/13) White. Three principal themes emerged: (1) existing reminders and organizational tools are often insufficient for consistent adherence; (2) adherence barriers are multifaceted, often involving autonomy vs care partner support; and (3) both adolescents and young adults and care partners showed strong interest in a dyadic digital health intervention to foster collaboration and support shared adherence goals. CONCLUSIONS: This formative study highlights the complex dynamics of medication adherence in adolescent and young adult-care partner dyads and supports the need for a dyadic mHealth app to enhance adherence, collaboration, and relationship quality.