Development and pre-testing of a family-centered digital intervention to help families know what to EXPECT from pediatric acute lymphoblastic leukemia therapy.

PURPOSE: Acute lymphoblastic leukemia (ALL), the most common pediatric malignancy, involves multi-year treatment with substantial outpatient care, which contributes to high parent/caregiver burden. Communication gaps and complex treatment regimens can leave families feeling unprepared for care of their children with ALL. To address this, we co-developed and pre-tested a digital health intervention supporting communication about what to expect during and after pediatric ALL treatment.

METHODS

Employing an iterative, stakeholder-driven process, we co-developed and pre-tested a family-centered interactive website, "EXPECT," in two phases. Phase 1 included a secondary synthesis of stakeholder needed information and functionality (contextual inquiry), content creation, and website development, overseen by a multidisciplinary steering committee of clinical experts, patients, and families. In Phase 2 pre-testing, parents of patients with ALL rated the website's acceptability and provided feedback during semi-structured interviews.

RESULTS

Synthesis of previous patient, parent, and provider interviews revealed key priorities for intervention content and design which were addressed in content creation and web development. Pre-testing demonstrated high acceptability (4.7/5). Participants highlighted EXPECT's user-friendliness and innovative features such as the interactive treatment roadmap. Participants preferred to receive early access to the website, within weeks of initiating treatment, and anticipated using EXPECT throughout therapy and the post-treatment period, primarily on mobile devices.

CONCLUSION

EXPECT co-development resulted in an acceptable digital health intervention to support families of children with ALL. EXPECT is being refined in response to feedback and will be tested in real-time treatment discussions in a multi-center pilot study to evaluate feasibility, use, and preliminary efficacy.