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

Authors
  • Versteegh, Josette Jwm1
  • Dulfer, Karolijn1
  • Stuvel, Kira1
  • Pasmans, Suzanne Gma1
  • Utens, Elisabeth Mwj1, 2, 3, 4
  • 1 Erasmus University Medical Center-Sophia Children's Hospital, The Netherlands. , (Netherlands)
  • 2 University of Amsterdam, The Netherlands. , (Netherlands)
  • 3 The Bascule - Academic Center for Child Psychiatry, The Netherlands. , (Netherlands)
  • 4 Academic Medical Center, The Netherlands. , (Netherlands)
Type
Published Article
Journal
Journal of health psychology
Publication Date
Jan 01, 2020
Volume
25
Issue
13-14
Pages
2296–2316
Identifiers
DOI: 10.1177/1359105318790052
PMID: 30129381
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

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. To investigate neuropsychological/psychosocial functioning of Netherton syndrome patients and parents. A total of 12 Netherton syndrome patients and/or parents completed neuropsychological tests, semi-structured-interviews, and psychological-questionnaires. 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. Compared with normative data, Netherton syndrome patients showed neuropsychological and psychosocial problems. Standard follow-up is necessary to identify problems at early stage.

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