HEALTH-RELATED QUALITY OF LIFE IN NEUROMUSCULAR DISEASES

Author(s)

Spottke EA1, Mylius V2, Claus D3, Grothe C1, Heuss D4, Kiefer R5, Klockgether T1, Schrank B6, Schröder R1, Vielhaber S7, Walbert T1, Dodel R1, Schepelmann K2, 1Friedrich-Wilhelms-University, Bonn, Germany; 2Philipps-University, Marburg, Germany; 3Clinic Darmstadt, Darmstadt, Germany; 4University Erlangen, Erlangen, Germany; 5University Muenster, Muenster, Germany; 6Clinic of Diagnostics, Wiesbaden, Germany; 7Otto-von-Guericke University, Magdeburg, Germany

OBJECTIVES: To assess the health related quality of life in common neuromuscular disease. METHODS: The health related quality of life (HrQol) of 73 patients (mean age: 54.0±16.9; w/m: 41:32) with Amyotrophic Lateral Sclerosis (ALS, n=25), Myasthenia Gravis (MSG, n=32) or Facioscapulohumeral Muscular Dystrophy (FSHD, n=16) has been assessed using the SF-36 and the EQ-5D. RESULTS: Measuring the HrQol using the EQ-5D for the 3 diseases the overall score differs slightly depending on sex (female 0.79±0.22, male 0.66±0.29). In contrast the disease specific overall score for patients with ALS was 0.53±0.28, with FSHD 0.78±0.13 and for patients with MSG 0.87±0.19. This distribution was also true for the VAS (ALS 37.5±13.59, FSHD 59.06±17.91, MSG 65.63±24.02). The results of the SF-36 (n=72) subscale bodily pain and mental health for the 3 subgroups were not different. Differences were found for the subscales physical function (ALS 41±31, FSHD 45±35, MSG 72±29), role limitations due to physical problems (ALS 2±7, FSHD 40±43, MSG 49±51), general health perceptions (ALS 31±14, FSHD 52±21, MSG 39±49), vitality (ALS 37±15, FSHD 52±21, MSG 44±44), social functioning (ALS 56±29, FSHD 82±16, MSG 81±25) and role limitations due to emotional problems (ALS 24±60, FSHD 81±34, MSG 65±58). The results that the physical functioning of the ALS and FSHD patients are similar, but the general health perception of the FSHD patients needs further evaluation. An additional aspect is the strong role limitation due to emotional problems of ALS patients. CONCLUSIONS: Neuromuscular diseases have a considerable impact on health-related quality of life. Patients with ALS and FSHD have diminished scores in the EQ-5D overall score and in the VAS. The SF-36 reflects in more detail the influence of the 3 diseases on the different dimensions of health-related quality of life.

Conference/Value in Health Info

2004-10, ISPOR Europe 2004, Hamburg, Germany

Value in Health, Vol. 7, No. 6 (November/December 2004)

Code

NP1

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Neurological Disorders

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