Quality of life measurement in neurodegenerative and related conditions

Blog post by Crispin Jenkinson, Professor of Health Services Research, Department of Public Health, University of Oxford, and Senior Research Fellow, Harris Manchester College, Oxford, and Michele Peters, Research Officer,  Health Services Research Unit, Department of Public Health, University of Oxford

Patient reported outcome measures (PROMs) are questionnaires that ask people questions about their current health. PROMs assess or measure patients’ quality of life, or what is sometimes referred to as health-related quality of life. Two types of PROMs exists: generic and disease-specific. Generic PROMs can be used across a broad range of diseases as well as the general population; whereas disease-specific PROMs are designed to be used in a specific patient group. Disease-specific instruments are generally regarded as potentially both more precise and sensitive to changes than more generic measures because they are intended to reflect the particular demands of specific conditions. However, generic measures allow comparing health status of (disease) groups to population norms and between disease groups.

A few decades ago, the systematic collection of patient reports of their health and quality of life was a relatively new area of research. Today, PROMs are increasingly seen as central to the evaluation of health and medical care. In part this reflects the growth in ‘patient centred care’, and the importance now placed on public and patient views of healthcare. Thus healthcare must reflect the needs of patients, and assessment of services must reflect both ‘consumer’ views and ‘patient reported outcomes’. PROMs also feature in routine data collection systems and are regarded as important in the monitoring the provision of health care. Furthermore, they are increasingly used as primary outcomes measures in trials. Thus the measurement of patient-reported outcomes has moved into the mainstream of evaluation.

Crispin Jenkinson and Michele Peters are co-editors of Quality of Life Measurement in Neurodegenerative and Related Conditions, published by Cambridge University Press

Introductory chapters of the book outline the role of quality-of-life in neurology, and issues of measurement in this field. Subsequent chapters survey the most widely used quality-of-life assessment instruments, with particular attention to Parkinson’s disease, amyotrophic lateral sclerosis/ motor neuron disease, multiple system atrophy, progressive supranuclear palsy, Alzheimer’s/ dementia, and cerebral palsy. It also addresses issues relating to the translation of measures for use in cross-cultural studies, handling misuse of data, carer experiences of long-term conditions, and methodological challenges.

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