Background: Netherton syndrome is a rare severe skin disease. Clinical experience showed considerable psychosocial burdens among Netherton syndrome patients/families. Their (neuro)psychological functioning has never been investigated. Objective: To investigate neuropsychological/psychosocial functioning of Netherton syndrome patients and parents. Methods: A total of 12 Netherton syndrome patients and/or parents completed neuropsychological tests, semi-structured-interviews, and psychological-questionnaires. Results: Intelligence results showed disharmonic profiles, with below-average scores on processing speed. Neuropsychological problems and unfavorable outcomes on health-related quality of life, illness-appearance-related problems, and negative social consequences among patients/parents were found. Psychopathological (emotional) problems were reported; stigmatization, bullying was common among Netherton syndrome patients. Conclusion: Compared with normative data, Netherton syndrome patients showed neuropsychological and psychosocial problems. Standard follow-up is necessary to identify problems at early stage.

Additional Metadata
Keywords adults, children, Netherton syndrome, neuropsychological, parents, psychosocial, skin
Persistent URL dx.doi.org/10.1177/1359105318790052, hdl.handle.net/1765/110077
Journal Journal of Health Psychology: an interdisciplinary, international journal
Citation
Versteegh, J.J.W.M. (Josette JWM), Dulfer, K, Stuvel, K. (Kira), Pasmans, S.G.M.A, & Utens, E.M.W.J. (2018). Netherton syndrome; neuropsychological and psychosocial functioning of child and adult patients and their parents. Journal of Health Psychology: an interdisciplinary, international journal. doi:10.1177/1359105318790052