Patients' health-related quality of life and utilities associated with different stages of amyotrophic lateral sclerosis.

G. Kiebert, C. Green, C. Murphy, J. Mitchell, M. O'Brien, A. Burrell, P. Leigh

Research output: Contribution to journalArticle

49 Citations (Scopus)

Abstract

Objectives: 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.
Original languageEnglish
Pages (from-to)87-93
JournalJournal of the Neurological Sciences
Volume191
Issue number1-2
DOIs
Publication statusPublished - 1 Oct 2001

Keywords

  • PMED ID13677501 Health-related quality of life
  • Utilities
  • Amyotrophic lateral sclerosis

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