Quality of life and measures of quality of life in patients with neuromuscular disorders

Ted M Burns; Christopher D Graham; Michael R Rose; Zachary Simmons

doi:10.1002/mus.23245

Quality of life and measures of quality of life in patients with neuromuscular disorders

Ted M Burns, Christopher D Graham, Michael R Rose, Zachary Simmons

School of Psychology

Research output: Contribution to journal › Review article › peer-review

100 Citations (Scopus)

Abstract

In this review we present an overview of quality of life (QOL) and QOL measures in neuromuscular disorders. We discuss the characteristics of QOL measures used in neuromuscular research, highlighting differences between generic versus disease-specific and global versus health-related QOL instruments. The phenomenon of response shift is reviewed. Commonly used QOL instruments are reviewed for amyotrophic lateral sclerosis, muscle diseases, myasthenia gravis, and polyneuropathy. We also review some of what is known about QOL for patients with these neuromuscular disorders.

Original language	English
Pages (from-to)	9-25
Number of pages	17
Journal	Muscle & Nerve
Volume	46
Issue number	1
DOIs	https://doi.org/10.1002/mus.23245
Publication status	Published - Jul 2012

Keywords

Activities of Daily Living
Health Status
Humans
Neuromuscular Diseases/psychology
Psychometrics
Quality of Life
Surveys and Questionnaires

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10.1002/mus.23245

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title = "Quality of life and measures of quality of life in patients with neuromuscular disorders",

abstract = "In this review we present an overview of quality of life (QOL) and QOL measures in neuromuscular disorders. We discuss the characteristics of QOL measures used in neuromuscular research, highlighting differences between generic versus disease-specific and global versus health-related QOL instruments. The phenomenon of response shift is reviewed. Commonly used QOL instruments are reviewed for amyotrophic lateral sclerosis, muscle diseases, myasthenia gravis, and polyneuropathy. We also review some of what is known about QOL for patients with these neuromuscular disorders.",

keywords = "Activities of Daily Living, Health Status, Humans, Neuromuscular Diseases/psychology, Psychometrics, Quality of Life, Surveys and Questionnaires",

author = "Burns, {Ted M} and Graham, {Christopher D} and Rose, {Michael R} and Zachary Simmons",

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year = "2012",

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AU - Graham, Christopher D

AU - Rose, Michael R

AU - Simmons, Zachary

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N2 - In this review we present an overview of quality of life (QOL) and QOL measures in neuromuscular disorders. We discuss the characteristics of QOL measures used in neuromuscular research, highlighting differences between generic versus disease-specific and global versus health-related QOL instruments. The phenomenon of response shift is reviewed. Commonly used QOL instruments are reviewed for amyotrophic lateral sclerosis, muscle diseases, myasthenia gravis, and polyneuropathy. We also review some of what is known about QOL for patients with these neuromuscular disorders.

AB - In this review we present an overview of quality of life (QOL) and QOL measures in neuromuscular disorders. We discuss the characteristics of QOL measures used in neuromuscular research, highlighting differences between generic versus disease-specific and global versus health-related QOL instruments. The phenomenon of response shift is reviewed. Commonly used QOL instruments are reviewed for amyotrophic lateral sclerosis, muscle diseases, myasthenia gravis, and polyneuropathy. We also review some of what is known about QOL for patients with these neuromuscular disorders.

KW - Activities of Daily Living

KW - Health Status

KW - Humans

KW - Neuromuscular Diseases/psychology

KW - Psychometrics

KW - Quality of Life

KW - Surveys and Questionnaires

U2 - 10.1002/mus.23245

DO - 10.1002/mus.23245

M3 - Review article

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SP - 9

EP - 25

JO - Muscle & Nerve

JF - Muscle & Nerve

IS - 1

ER -

Quality of life and measures of quality of life in patients with neuromuscular disorders

Abstract

Keywords

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