Paediatric infliximab therapy: Patients' and parents' perspectives on treatment options

Aim: To assess patients' and parents' perspectives on the impact of infliximab treatment on daily life and the acceptability and feasibility of (infliximab or adalimumab) home treatment, in the light of the perceived value of hospital services. Methods: A descriptive qualitative study was conducted at University College Hospital London. Data were collected via 25 semi-structured interviews with patients (aged 14-19) from both gastroenterology and rheumatology specialties, prescribed infliximab, and their parents. Results: The majority of participants preferred to continue infliximab treatment at their current hospital, rather than be treated in their local hospital or at home. The main reasons were the specialised care in their current hospital, the continuity of care and hospital staff, resistance to the method of adalimumab administration and expected problems with compliance. Hospital services were highly valued and current infliximab treatment at the hospital was considered to have either no impact on family and school life, or to have improved it. Conclusion: Infliximab is an effective therapy for inflammatory bowel diseases and rheumatology conditions in young people, bringing either no negative impact on, or improvement of school and family life. In association with patients' and parents' positive appraisal for hospital services and their confidence in the clinical team, patients and parents do not express a preference for infliximab or adalimumab home treatment, despite current health policy aimed towards therapy closer to, or at, home.