Patients' health-related quality of life and utilities associated with different stages of amyotrophic lateral sclerosis.
OBJECTIVE
Amyotrophic lateral sclerosis (ALS) is a devastating disease that has serious consequences in terms of impairments and disabilities, which are expected to impact on health-related quality of life (HRQL). The aim of the present study was to assess self-reported health status and HRQL, as well as patients' own valuation of their present health state in a sample of patients with different levels of severity of ALS.


METHODS
Structured interviews were conducted with 77 patients with different levels of disease severity. Patients completed a disease-specific health status measure (ALSAQ-40), a generic health status measure (EuroQol EQ-5D), visual analogue scale (VAS) rating of current health and a standard gamble (SG) exercise to provide health state utilities for their own health state.


RESULTS
The results from the ALSAQ-40 and EQ-5D descriptive system indicate that patients' HRQL decreases systematically with increasing severity of disease. Patients' mean VAS rating of their own health ranged from 0.74 for stage 1 (early) disease severity, to 0.37 for stage 4 (late stage) disease severity. Utilities elicited via SG were systematically higher than VAS scores and ranged from a mean of 0.79 for stage 1 disease severity to a mean of 0.45 for stage 4 disease severity.
Kiebert
G M
GM
MEDTAP International, 20 Bloomsbury Square, London, UK.
Green
C
C
Murphy
C
C
Mitchell
J D
JD
O'Brien
M
M
Burrell
A
A
Leigh
P N
PN
D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000145:classification* / Q000534:rehabilitation*; D002755:Choice Behavior; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D018450:Disease Progression; D005260:Female; D006304:Health Status; D006305:Health Status Indicators; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D011237:Predictive Value of Tests; D011788:Quality of Life; D012650:Self Disclosure; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D006113:United Kingdom