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Patients' health-related quality-of-life and health state values for motor neurone disease/amyotrophic lateral sclerosis

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Abstract

Motor neurone disease (MND) has a severe impact on patient quality of life, especially in later stages of the disease. This study assesses the health-related quality of life (HRQL) of MND patients, and for the first time elicits health state values from patients for their present health state. A structured interview was conducted with 77 patients. Patients completed a disease specific health status measure (ALSAQ-40), a generic health status measure (EuroQol EQ-5D), a visual analogue scale (VAS) and a standard gamble (SG) exercise. The ALSAQ-40 was sensitive to disease severity. Patients' mean VAS rating of their own health ranged from 0.74 for stage 1 (early) disease severity (n = 15), to 0.37 for stage 4 (late stage) disease severity (n = 19). Utilities elicited via SG varied from a mean of 0.79 for stage 1 disease severity to a mean of 0.45 for stage 4 disease severity. The EQ-5D derived single index ranged from a mean of 0.63 for stage 1 disease severity to a mean of −0.01 for stage 4 disease severity. This study demonstrates that it is feasible and practical to obtain health state values from MND patients and it provides evidence that patients place a high value on their HRQL, even in cases where health status is very poor.

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Authors and Affiliations

  1. Wessex Institute for Health Research and Development, Boldrewood, University of Southampton, Southampton, London, UK

    C. Green

  2. MEDTAP International, 20 Bloomsbury Square, London, UK

    G. Kiebert

  3. Department of Neurology, Guy's King's and St Thomas' School of Medicine and the Institute of Psychiatry, King's College, London, UK

    C. Murphy & P.N. Leigh

  4. Department of Neurology, Royal Preston Hospital, Sharoe Green Lane, Preston, UK

    J.D. Mitchell & M. O'Brien

  5. Aventis Pharma Ltd, 50 Kings Hill Avenue, West Malling, Kent, UK

    A. Burrell

Authors
  1. C. Green
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  2. G. Kiebert
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  3. C. Murphy
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  4. J.D. Mitchell
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  5. M. O'Brien
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  6. A. Burrell
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  7. P.N. Leigh
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Green, C., Kiebert, G., Murphy, C. et al. Patients' health-related quality-of-life and health state values for motor neurone disease/amyotrophic lateral sclerosis. Qual Life Res 12, 565–574 (2003). https://doi.org/10.1023/A:1025052609818

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  • DOI: https://doi.org/10.1023/A:1025052609818

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