Health-Related Quality of Life in Patients with Neurofibromatosis Type 1

被引：76

作者：

Kodra, Yllka ^{[1
]}

Giustini, Sandra ^{[2
]}

Divona, Luigina ^{[2
]}

Porciello, Roberto ^{[2
]}

Calvieri, Stefano ^{[2
]}

Wolkenstein, Pierre ^{[3
]}

Taruscio, Domenica ^{[1
]}

机构：

[1] Ist Super Sanita, Natl Registry Rare Dis, IT-00161 Rome, Italy

[2] Univ Roma La Sapienza, Inst Dermatol, Rome, Italy

[3] Univ Paris 12, AP HP, Hop Henri Mondor, Dept Dermatol, Paris, France

来源：

DERMATOLOGY | 2009年 / 218卷 / 03期

关键词：

Quality of life; Neurofibromatosis type 1; SF-36; questionnaire; Skindex-29; IMPAIRMENT; IMPACT;

D O I：

10.1159/000187594

中图分类号：

R75 [皮肤病学与性病学];

学科分类号：

100206 ;

摘要：

Background/Aims: Neurofibromatosis type 1 (NF1), a genetic condition most commonly characterized by the presence of dermal neurofibromas and cafe 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. Copyright (C) 2008 S. Karger AG, Basel

引用

页码：215 / 220

页数：6

共 14 条

[1]

Abeni D., 2001, Giornale Italiano di Dermatologia e Venereologia, V136, P73

[2] Gender response to neurofibromatosis 1 [J].

Ablon, J .

SOCIAL SCIENCE & MEDICINE, 1996, 42 (01) :99-110

[3]

APOLONE G, 1998, SF36 GUER ASS

[4]

Friedman JM, 1999, AM J MED GENET, V89, P1

[5]

Karwacki Marek W, 2006, Med Wieku Rozwoj, V10, P923

[6] Poor reporting of quality of life outcomes in dermatology randomized controlled clinical trials [J].

Le Cleach, Laurence ;

Chassany, Olivier ;

Levy, Annabelle ;

Wolkenstein, Pierre ;

Chosidow, Olivier .

DERMATOLOGY, 2008, 216 (01) :46-55

[7] The reduced impact of psoriasis questionnaire has good psychometric properties in Italian patients [J].

Nijsten, Tamar ;

Sampogna, Francesca ;

Stern, Robert S. ;

Abeni, Damiano .

DERMATOLOGY, 2007, 215 (04) :348-351

[8] NEUROFIBROMATOSIS TYPE-1 - REVIEW OF THE 1ST 200 PATIENTS IN AN AUSTRALIAN CLINIC [J].

NORTH, K .

JOURNAL OF CHILD NEUROLOGY, 1993, 8 (04) :395-402

[9] Impact of neurofibromatosis 1 on quality of life: A cross-sectional study of 176 American cases [J].

Page, Patricia Z. ;

Page, Grier P. ;

Ecosse, Emmanuel ;

Korf, Bruce R. ;

Leplege, Alain ;

Wolkenstein, Pierre .

AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2006, 140A (18) :1893-1898

[10] Neurofibromatosis type 1 or Von Recklinghausen's disease [J].

Pinson, S ;

Wolkenstein, P .

REVUE DE MEDECINE INTERNE, 2005, 26 (03) :196-215

← 1 2 →