Abstract
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.
| Original language | English |
|---|---|
| Pages (from-to) | 2296-2316 |
| Number of pages | 21 |
| Journal | Journal of health psychology |
| Volume | 25 |
| Issue number | 13-14 |
| Early online date | 21 Aug 2018 |
| DOIs | |
| Publication status | Published - 1 Nov 2020 |
Keywords
- Netherton syndrome
- adults
- children
- neuropsychological
- parents
- psychosocial
- skin