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.
Preface; 1. Health status measures in neurodegenerative disorders Crispin Jenkinson, Robert Harris and Mark Bromberg; 2. Criteria for assessing health status measures Ray Fitzpatrick and Crispin Jenkinson; 3. Parkinson's disease Crispin Jenkinson and Ray Fitzpatrick; 4. Motor neurone disease Crispin Jenkinson, Ray Fitzpatrick, Robert Harris and Mark Bromberg; 5. Multiple sclerosis Jeremy Hobart; 6. Multiple system atrophy Anette Schrag, Caroline Selai and Robert Harris; 7. Progressive supranuclear palsy Anette Schrag, Caroline Selai and Robert Harris; 8. Alzheimer's/dementia Elizabeth Gibbons and Michele Peters; 9. Cerebral palsy Elizabeth Waters, Amy Shelly and Elise Davis; 10. Individualised measures of quality of life Mark Bromberg; 11. Rasch analysis of health status data Jeremy Hobart; 12. Carers and neurodegenerative disease Michele Peters, Ray Fitzpatrick and Crispin Jenkinson; 13. Missing data in trials Crispin Jenkinson, Robert Harris and Ray Fitzpatrick; 14. Issues in the cross cultural adaptation of quality of life measures Michele Peters; Glossary; Index.