Interactive Medication Calendars to Support At-Home Care of Pediatric Patients With ALL.

Abstract

Pediatric ALL, the most common childhood cancer, requires complex, multiyear treatment. Most treatment occurs in the outpatient setting, and families must manage and administer chemotherapy and supportive care medications at home. Many parents feel overwhelmed by medication quantities, varied administration methods, and complex schedules, collectively contributing to high caregiver burden and medication errors. Strategies to support families in at-home medication administration are needed. Using a 2-phase user-centered design process, we developed and pretested interactive medication calendars to support pediatric ALL treatment on Dana-Farber Cancer Institute ALL Consortium trials. In phase I, secondary qualitative analyses of interviews with patients, families, and health care providers revealed desired components and functionality to support ALL treatment management. A multidisciplinary steering committee oversaw the cocreation of medication calendars with a subcommittee of health care providers, a graphic designer, and digital-health specialists. In phase II, calendars were pretested with families. Analyses revealed desires for a big-picture treatment overview alongside phase-specific information and risk group-based resources. Medication calendars were developed to be available digitally via password-protected website. Calendars include treatment cycle-length overviews, individual medications, administration schedule and frequency, and icons denoting administration mode (eg, oral, intrathecal). Hyperlinked teaching sheets describe drug-specific side effects and toxicities, letting families choose information detail. Providers can also print calendars for patient-specific annotation to support at-home care. In pretesting, parents welcomed personalized calendars and said they would rely on them for at-home administration. Interactive medication calendars may improve family self-management through supporting medication administration across risk groups and treatment phases. Calendars are included in a family-centered digital intervention to improve pediatric ALL therapy communication, which will be pilot-tested to assess feasibility and outcomes.