Netherton syndrome; neuropsychological and psychosocial functioning of child and adult patients and their parents.
J Health Psychol
; 25(13-14): 2296-2316, 2020.
Article
en En
| MEDLINE
| ID: mdl-30129381
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.Palabras clave
Texto completo:
1
Bases de datos:
MEDLINE
Asunto principal:
Calidad de Vida
/
Síndrome de Netherton
/
Funcionamiento Psicosocial
Tipo de estudio:
Prognostic_studies
/
Qualitative_research
Límite:
Adult
/
Child
/
Female
/
Humans
/
Male
Idioma:
En
Revista:
J Health Psychol
Asunto de la revista:
PSICOLOGIA
Año:
2020
Tipo del documento:
Article
País de afiliación:
Países Bajos