Health-Related Quality of Life in Movement Disorders

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. , 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.