Quality of Life Measurement in Neurodegenerative and Related Conditions

by Edited by Crispin Jenkinson , Michele Peters , Mark B. Bromberg

• ISBN13: 9780521829014
• ISBN10: 0521829011
• Edition: 1st
• Format: Hardcover
• Copyright: 2011-03-14
• Publisher: Cambridge University Press

Summary

Patient reported outcome measures are central to the evaluation of medical care and treatment regimes. Such measures depart from traditional clinical assessments as they are based on issues known to be of importance to patients. This book outlines the development and application of a variety of such measures in a wide range of neurological conditions. Introductory chapters outline issues in the application and validation of quality-of-life measures in neurology. Subsequent chapters survey the most widely used quality-of-life instruments in Parkinson's disease, motor neurone disease, multiple sclerosis, multiple system atrophy, progressive supranuclear palsy, and Alzheimer's/dementia. A chapter on cerebral palsy deals with the particular challenges to developing outcome measures for children. The book also addresses issues relating to the translation of measures for use in cross-cultural studies, handling missing data, carer experiences of long-term conditions, and methodological challenges. Essential reading for clinicians and researchers working in the field of neurology.

Author Biography

Crispin Jenkinson is Professor of Health services Research, Department of Public Health, university of Oxford, and Senior Research Fellow, Harris Manchester College, Oxford, UK. Michele Peters is Senior Research Scientist, Health Services Research Unit, Department of Public Health, university of Oxford, UK. Mark B. Bromberg is Professor of Neurology at the University of Utah, Salt Lake City, USA.

Table of Contents

List of contributors	p. vii
Preface	p. xi
Aspects of methodology relevant to patient-reported outcome measures (PBOMs)	p. 1
The development and validation of the Parkinson's Disease Questionnaire and related measures	p. 10
The Multiple Sclerosis Impact Scale (MSIS-29): Initial development, subsequent revision, lessons learned	p. 24
Patient-reported outcome measurement in motor neuron disease/amyotrophic lateral sclerosis - the ALSAQ-40 and ALSAQ-5	p. 41
Measuring quality of life in progressive supranuclear palsy: The PSP-QoL	p. 52
Measuring quality of life in multiple system atrophy	p. 60
Health-related quality of life in Huntington's disease	p. 71
Measuring quality of life in dementia	p. 82
Condition-specific instruments to measure the quality of life (QoL) of children and adolescents with cerebral palsy (CP)	p. 95
Outcome measures for informal carers of individuals with neurodegenerative conditions	p. 114
Translating patient-reported outcome measures (PROMs) for cross-cultural studies	p. 139
Rasch analysis	p. 147
A method for imputing missing questionnaire data	p. 165
Individualized quality of life measurement in neurodegenerative disorders	p. 174
Index	p. 188
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