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Health-Related Quality of Life in Movement Disorders

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Handbook of Disease Burdens and Quality of Life Measures

Abstract:

This paper reviews the literature on health status and quality of life (QOL) in patients with movement disorders with a focus on the following diseases: Parkinson’s disease, atypical Parkinsonism (multiple system atrophy, progressive supranuclear palsy, dementia with Lewy bodies), Huntington’s disease and Restless Legs Syndrome.

Several disease-specific instruments are currently available for the different movement disorders. For Parkinson’s disease, 8 different scales have been developed and almost all focus primarily on the health status of the patient. Parkinson’s disease is associated with reduced health status, including motor and non-motor physical complications of the disease, emotional well-being and social functioning. Although the impact is greater in advanced stages of Parkinson’s disease, there is no close relationship between disease duration and impact on health status. Occurrence and severity of depression, however, correlates notably with health status scores, and a number of studies have found depression to be one of the primary determinants of poor health status.

In atypical Parkinsonism specific, validated instruments exist for multiple system atrophy and progressive supranuclear palsy. A considerable reduction in health status scores was reported for all patients suffering from atypical Parkinsonism and health status appeared to be impaired more severely than in Parkinson’s disease after the same disease duration. In dementia with Lewy bodies, health status is affected more severely than in matched patients with Alzheimer’s disease.

Condition-specific instruments have been developed and validated for health status assessment in both patients with Huntington’s disease and their caregivers. The impact of Huntington’s disease on quality of life is considerable and not only limited to affected patients but also affects their families, particularly family members who may be carrying the gene, as well as caregivers of patients. In restless legs syndrome, several disease-specific instruments are currently available and have been used in clinical trails. Health status is markedly reduced in patients with restless legs syndrome and is affected to a similar extent as in patients with Parkinson’s disease.

Although the evaluation of alternative outcomes in movement disorders has emerged in recent years, many questions have not been addressed and thus require further research.

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Abbreviations

15D:

15D questionnaire

EQ-5D:

EuroQOL

EQ-VAS:

EuroQOL visual analogue scale

HrQOL:

Health-related quality of life

HUI:

Health Utility Index

MSA:

multiple system atrophy

NHP:

Nottingham Health Profile

PDQ-39:

Parkinson’s disease questionnaire 39-item version

PDQ-8:

Parkinson’s Disease Questionnaire 8-item version

PDQL:

Parkinson’s Disease Quality of Life questionnaire

PDQUALIF:

Parkinson’s Disease Quality of Life

PDSI:

Parkinson’s Disease Symptom Inventory

PIMS:

Parkinson’s Impact Scale

PLQ:

Parkinson Lebensqualität

PSP:

Progressive supranuclear palsy

QLI:

Quality of Life Index

QLS(M)-MD/QLS(M)-DBS:

Quality of life with DBS

QOL:

quality of life

RLS-QLI:

Restless legs syndrome quality of life instrument

RLS-QOL:

Restless legs syndrome quality of life

SCOOPA-PS/-AUT/-SLEEP/-COG:

Scales for Outcomes in Parkinson’s disease

SEIQOL-DW:

Schedule for the Evaluation of Individual Quality of Life - Direct Weighting

SF 36:

Short Form Health Survey

SIP:

Sickness Impact Profile

UPDRS:

Unified Parkinson’s Disease Rating Scale

WHOQOL100-BREF:

World Health Organization Quality of Life assessment instrument

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Authors and Affiliations

  1. Department of Neurology, Philipps-University Marburg, Marburg, Germany

    R. Dodel

  2. University Department of Clinical Neurosciences, Royal Free and University College Medical School, London, UK

    A. Schrag

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  1. R. Dodel
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  2. A. Schrag
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Editors and Affiliations

  1. Dept. Nutrition and Dietetics Nutritional Sciences Research Division School of Biomedical & Health Sciences, King's College London, Franklin‐Wilkins Building 150 Stamford Street, SE1 9NH, London, UK

    Victor R. Preedy (Prof.) (Prof.)

  2. Mel and Enid Zuckerman College of Public Health, University of Arizona, Health Science Center 1295 N. Martin, P.O. Box 245155, 85724-5155, Tucson, AZ

    Ronald R. Watson (Prof.) (Prof.)

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Dodel, R., Schrag, A. (2010). Health-Related Quality of Life in Movement Disorders. In: Preedy, V.R., Watson, R.R. (eds) Handbook of Disease Burdens and Quality of Life Measures. Springer, New York, NY. https://doi.org/10.1007/978-0-387-78665-0_234

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  • DOI: https://doi.org/10.1007/978-0-387-78665-0_234

  • Publisher Name: Springer, New York, NY

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