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J Pediatr. 2006 Sep;149(3):348-53.

Quality of life and psychological adjustment in children and adolescents with neurofibromatosis type 1.

Author information

  • 1Division of Psychosomatics and Psychiatry, University Children's Hospital, Steinwiesstrasse 75, CH-8032 Zurich, Switzerland.

Abstract

OBJECTIVE:

To assess quality of life (QoL) and psychological adjustment in children and adolescents with neurofibromatosis type 1 (NF1).

STUDY DESIGN:

Forty-six patients with NF1 were investigated between the ages of 7 and 16 years (mean, 11.6 years), with children and parents used as informants. TNO-AZL Questionnaire for Children's Health-Related Quality of Life and Child Behavior Checklist scores were compared with healthy reference groups. Predictive values of sociodemographic variables, illness-related variables, and family-related variables for quality of life and psychological adjustment were assessed.

RESULTS:

Most dimensions of QoL in NF1 children and adolescents were different from reference values. Deviations in the NF1 group were an impairment of motor, cognitive, and social functioning and a reduction of positive and negative emotions. Also, psychological adjustment in patients with NF1 was significantly impaired compared with normal subjects. Illness-related variables had a negative impact on the emotional domain of QoL. Good family relationships positively affected both QoL and psychological adjustment.

CONCLUSIONS:

QoL and psychological adjustment are impaired in children and adolescents with NF1. Illness-related variables and the quality of family relationships are important predictors.

PMID:
16939745
[PubMed - indexed for MEDLINE]
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