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Dermatology. 2009;218(3):215-20. doi: 10.1159/000187594. Epub 2008 Dec 17.

Health-related quality of life in patients with neurofibromatosis type 1. A survey of 129 Italian patients.

Author information

1
Istituto Superiore di SanitĂ -National Registry for Rare Diseases, Rome, Italy.

Abstract

BACKGROUND/AIMS:

Neurofibromatosis type 1 (NF1), a genetic condition most commonly characterized by the presence of dermal neurofibromas and café au lait macules, has a significant impact upon quality of life (QoL). The study aimed to assess the impact of NF1 on QoL.

METHODS:

A total of 129 patients with NF1 completed the study questionnaires in an Italian academic dermatological centre and a neurofibromatosis clinic at the University of Rome.

RESULTS:

All domains of general-health-related QoL were affected. Patients with serious cosmetic problems reported a greater impact on the emotional domain.

CONCLUSION:

In our study, the impact of the cosmetic features on QoL had the greatest importance. This survey demonstrates the usefulness of QoL measurements in supplementing clinical assessments.

PMID:
19088462
DOI:
10.1159/000187594
[Indexed for MEDLINE]

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