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. 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

Yllka Kodra  1 , Sandra Giustini, Luigina Divona, Roberto Porciello, Stefano Calvieri, Pierre Wolkenstein, Domenica Taruscio
Affiliations

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

Yllka Kodra et al. Dermatology. 2009.

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.

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