In this study, the care for children with a severe chronic skin disease in our national expert center of pediatric dermatology was evaluated. Patients and their parents were questioned by using existing questionnaires: 50 pediatric patients completed the modified “my positive health” questionnaire of Huber and 51 parents completed Pelentsov parental needs scale. Nineteen involved professionals answered a questionnaire with open boxes. Parents of children with a variety of chronic skin diseases and young adult patients were interviewed to find out what an optimal approach would look like according to them. Children with a severe chronic and/or congenital skin disorder score high on the “my positive health” questionnaire, indicating they are able to adapt and self-manage. Their highest median score was measured for the dimension “quality of life.” Their parents expect improvement of “working with health care professionals,” more specifically they want them to adopt a more holistic approach throughout the patient’s life. Structured interviews showed they expect that a multidisciplinary team of care providers determine together with the patient and its family—in advance—which care is needed, at what time and by whom. The interviewed professionals indicated adoption of a holistic multidisciplinary approach as the single largest improvement to achieve better care. Conclusion: Although these children with a severe chronic and/or congenital skin disease were able to adapt and self-manage, they need a more personalized integrative multidisciplinary and systematic transmural approach covering all aspects of life during their lifetime.

Additional Metadata
Keywords Pediatric dermatology . Severe congenital skin disorders . Multidisciplinary approach . Evaluation of care . Quality of life
Persistent URL dx.doi.org/10.1007/s00431-019-03366-z, hdl.handle.net/1765/117789
Journal European Journal of Pediatrics
Citation
Maeseneer, H., van Gysel, D, De Schepper, S., Lincke, C.R, Sibbles, B, Versteegh, J., … Pasmans, S.G.M.A. (2019). Care for children with severe chronic skin diseases. European Journal of Pediatrics, 178(7), 1095–1103. doi:10.1007/s00431-019-03366-z