Handbook of Disease Burdens and Quality of Life Measures pp 4013-4034 | Cite as
Health-Related Quality of Life in Movement Disorders
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.
KeywordsMovement Disorder Multiple System Atrophy Lewy Body Dementia With Lewy Body Progressive Supranuclear Palsy
List of Abbreviations:
EuroQOL visual analogue scale
Health-related quality of life
Health Utility Index
multiple system atrophy
Nottingham Health Profile
Parkinson’s disease questionnaire 39-item version
Parkinson’s Disease Questionnaire 8-item version
Parkinson’s Disease Quality of Life questionnaire
Parkinson’s Disease Quality of Life
Parkinson’s Disease Symptom Inventory
Parkinson’s Impact Scale
Progressive supranuclear palsy
Quality of Life Index
Quality of life with DBS
quality of life
Restless legs syndrome quality of life instrument
Restless legs syndrome quality of life
Scales for Outcomes in Parkinson’s disease
Schedule for the Evaluation of Individual Quality of Life - Direct Weighting
- SF 36
Short Form Health Survey
Sickness Impact Profile
Unified Parkinson’s Disease Rating Scale
World Health Organization Quality of Life assessment instrument
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