Netherton syndrome; neuropsychological and psychosocial functioning of child and adult patients and their parents.

Autor: Versteegh JJ; Erasmus University Medical Center-Sophia Children's Hospital, The Netherlands., Dulfer K; Erasmus University Medical Center-Sophia Children's Hospital, The Netherlands., Stuvel K; Erasmus University Medical Center-Sophia Children's Hospital, The Netherlands., Pasmans SG; Erasmus University Medical Center-Sophia Children's Hospital, The Netherlands., Utens EM; Erasmus University Medical Center-Sophia Children's Hospital, The Netherlands.; University of Amsterdam, The Netherlands.; The Bascule - Academic Center for Child Psychiatry, The Netherlands.; Academic Medical Center, The Netherlands.
Jazyk: angličtina
Zdroj: Journal of health psychology [J Health Psychol] 2020 Nov-Dec; Vol. 25 (13-14), pp. 2296-2316. Date of Electronic Publication: 2018 Aug 21.
DOI: 10.1177/1359105318790052
Abstrakt: 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.
Databáze: MEDLINE
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