Integrating experience sampling methodology in clinical practice for fatigued children with a chronic health condition: A qualitative study on future implementation of PROfeel

Background
One in five children with chronic health conditions experiences severe fatigue, influenced by biological, physical, and psychosocial factors. Experience Sampling Methodology (ESM) enables personalised insight into factors, preferably modifiable (i.e., lifestyle), that are associated with fatigue and related disabilities. Despite its potential, no ESM-intervention has yet transitioned from research to paediatric clinical practice. This qualitative study assessed implementation factors from the
Methods
PROfeel starts with smartphone-based ESM for personal fatigue insights, followed by shared decision-making with a professional on insight-based and tailored lifestyle goals. For this study, we conducted semi-structured interviews and used inductive thematic coding for analysis. Respondents were end-users; health care professionals (HCPs, N = 20), patients (N = 11), and their important others (N = 11). Patients, aged 13 to 21, had followed PROfeel in a research setting. Ten patient-parent dyads
Results
HCPs agreed that the lead clinician, specifically the paediatrician, should identify patients for PROfeel after excluding medically treatable causes for fatigue. However, opinions on the most appropriate professional to deploy PROfeel varied based on differences in care pathways for specific diagnostic groups and differences in HCP's perceived scope of responsibility. This scope ranged from disease-focused to holistic (i.e., excluding or including fatigue). The expected added value for patients
Discussion
Carefully selecting patients who could benefit and are motivated to comply is essential. Embedding PROfeel in a universally applicable care path might not be feasible or desirable, given the heterogeneity of working structures and HCPs' perspectives on responsibilities. This heterogeneity is a known barrier to implementation in clinical practice. HCPs, both as subscribers and deployers of PROfeel, play a vital role in its implementation. Since HCPs' support for PROfeel mostly depends on added
Conclusion
Although PROfeel is feasible for carefully selected patients, to bridge the gap between research and clinical practice for an ESM-supported blended care trajectory such as PROfeel, involving patients in the future development and implementation steps is key. Besides, for embedding the intervention into existing care paths and assigning responsibilities to HCPs, these should fit the heterogeneity of clinical practice.