1型神经纤维瘤病患者的健康相关生活质量。对129名意大利患者的调查。
Health-related quality of life in patients with neurofibromatosis type 1. A survey of 129 Italian patients.
作者信息
Kodra Yllka, Giustini Sandra, Divona Luigina, Porciello Roberto, Calvieri Stefano, Wolkenstein Pierre, Taruscio Domenica
机构信息
Istituto Superiore di Sanità-National Registry for Rare Diseases, Rome, Italy.
出版信息
Dermatology. 2009;218(3):215-20. doi: 10.1159/000187594. Epub 2008 Dec 17.
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.
背景/目的：1型神经纤维瘤病（NF1）是一种遗传性疾病，最常见的特征是出现皮肤神经纤维瘤和咖啡斑，对生活质量（QoL）有重大影响。本研究旨在评估NF1对生活质量的影响。
方法
共有129例NF1患者在意大利一家学术性皮肤病中心和罗马大学的神经纤维瘤病诊所完成了研究问卷。
结果
所有与总体健康相关的生活质量领域均受到影响。存在严重美容问题的患者报告对情感领域的影响更大。
结论
在我们的研究中，美容特征对生活质量的影响最为重要。这项调查证明了生活质量测量在补充临床评估方面的有用性。
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