Quality of Life Measurement in Neurodegenerative and Related Conditions

Book excerpt: 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.