Experience sampling methodology in pediatrics: a qualitative analysis of user perspectives on the PROfeel blended mHealth intervention for fatigue

INTRODUCTION: Children with chronic health conditions are at risk for persistent somatic symptoms such as fatigue, influenced by biological and psychosocial factors. Experience Sampling Methodology (ESM) in mobile Health (mHealth) enables personalized insights into symptom-related factors, potentially improving self-management and quality of life. Blended care-combining digital and in-person support-enhances adherence and interpretation of ESM insights. Despite its potential, no blended ESM intervention has yet transitioned into pediatric care. This study explores direct and indirect user perspectives on the use and implementation of ESM-supported blended mHealth in pediatric care.

METHODS: We conducted an exploratory qualitative study on PROfeel, an ESM-supported blended mHealth intervention for fatigue management. PROfeel includes a smartphone-based ESM period, followed by face-to-face feedback and shared decision-making for tailored lifestyle goals. Semi-structured interviews were conducted with patients ( N  = 11), important others (IOs, N  = 11), and healthcare professionals (HCPs, N  = 20). Patients, aged 13-25, used PROfeel in a research setting. IOs were primarily parents. HCPs included physicians, nurses, and psychologists.

RESULTS: Patients and IOs identified three themes: (1) wish for improvement vs. ESM effort, (2) value of insights, and (3) support and ownership. Patients were motivated by improvement but found ESM effort challenging. Insights into fatigue and lifestyle factors were valued, though lifestyle change remained limited. Independent use fostered ownership, while parents provided support. HCPs identified the themes (1) balancing patient value and effort, (2) defining roles within the intervention, and (3) concerns about effectiveness, financial coverage, and time. Patient value was the key determinant for PROfeel use, balanced against intervention effort and eligibility criteria. HCPs stressed the need for aligned roles and practical feasibility.

DISCUSSION: ESM-supported care shows promise for children with chronic conditions and may serve as an early intervention. Blended care accommodates autonomy levels and supports ESM insight interpretation. Implementation in hospital-wide care could suit varied clinical needs. Active involvement of end users is essential to maximize patient value and ensure successful integration into pediatric care.