ebook img

Quality of Life Assessment: Key Issues in the 1990s PDF

490 Pages·1993·9.881 MB·English
Save to my drive
Quick download
Download
Most books are stored in the elastic cloud where traffic is expensive. For this reason, we have a limit on daily download.

Preview Quality of Life Assessment: Key Issues in the 1990s

Quality of Life Assessment: Key Issues in the 1990s Quality of Life Assessment: Key Issues in the 1990s EDITED BY Stuart R. Walker Director of the Centre for Medicines Research, Carshalton, and Honorary Professor, Welsh School of Pharmacy, University of Wales College, Cardiff, UK and Rachel M. Rosser Professor of Psychiatry and Head of Department University College and Middlesex School of Medicine, London University, London, UK SPRINGER-SCIENCE+BUSINESS MEDIA, B.V. A catalogue record for this book is available from the British Library ISBN 978-94-010-5328-0 Library of Congress Cataloging-in-Publication Data Quality of life assessment : key issues in the 1990s I edited by Stuart R. Walker and Rachel M. Rosser. p. cm. Inc1udes bibliographica1 references and index. ISBN 978-94-010-5328-0 ISBN 978-94-011-2988-6 (eBook) DOI 10.1007/978-94-011-2988-6 1. Health status indicators. 2. Quality of life-Evaluation. 1. Walker, Stuart R., 1944- II. Rosser, Rachel. [DNLM: 1. Quality ofLife. WA 30 Q103] RA407.Q3 1992 615.5'028'7-dc20 DNLMIDLC for Library of Congress 92-49860 CIP Copyright © 1993 by Springer Science+Business Media Dordrecht Originally published by Kluwer Academic Publishers in 1993 AII rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanica1, photocopying, recording or otherwise, without prior permission from the publishers. Springer-Science+Business Media, B.V .. Contents Preface viii Foreword IX Notes on contributors Xl I. Philosophies, Concepts and Key Instruments Involved in Assessing Quality of Life 1. The new era of quality of life assessment J. Leighton Read 3 2. Assessing health-related quality of life for clinical decision-making Donald L. Patrick and Pennifer Erickson 11 3. The Quality of Well-being Scale: rationale for a single quality of life index Robert M. Kaplan, John P. Anderson and Theodore G. Ganiats 65 4. Development, testing, and use of the Sickness Impact Profile Marilyn Bergner 95 5. The Nottingham Health Profile James McEwen 111 6 The McMaster Health Index Questionnaire: an update Larry W Chambers 131 7. A health index and output measure Rachel M. Rosser 151 8. The Index of Health-related Quality of Life (IHQL): a new tool for audit and cost-per-QALY analysis Rachel Rosser, Richard Allison, Carole Butler, Michaela Cottee, Rosalind Rabin and Caroline Selai 179 v vi QUALITY OF LIFE ASSESSMENT: KEY ISSUES IN THE 19905 9. A fifteen-dimensional measure of health-related quality of life (l5D) and its applications Harri Sintonen and Markku Pekurinen 185 10. The EuroQol quality of life project Rachel Rosser and Harri Sintonen 197 11. A WHO method for the assessment of health-related quality of life (WHOQOL) Norman Sartorius 201 12. Indices versus profiles - advantages and disadvantages Monika Bullinger 209 13. The On-Line Guide to Quality-of-Life Assessment (OLGA): resource for selecting quality of life assessments Penni/er Erickson and Jeffrey Scott 221 II. Assessing Quality of Life in Major Disease Areas 14. Measuring the quality of life of patients with cancer Peter Selby 235 15. Measuring the quality of life of patients with rheumatoid arthritis Richard A. Deyo 269 16. Measuring the quality of life of patients with Parkinson's disease J.S. Shindler, R. Brown, P. W!lburn and J.D. Parkes 289 17. Measurement of health-related quality of life in asthma and chronic obstructive airways disease Paul W Jones 301 18. Measuring quality of life in hypertension Astrid Fletcher and Christopher Bulpitt 321 19. Measuring the quality of life of patients with angina M.l. VandenBurg 333 20. Measuring quality of life in psychiatry Sonja M. Hunt and Stephen P. McKenna 343 21. Measuring the quality of life of patients with skin disease M.S. Salek 355 CONTENTS vii III. Viewpoints and Perspectives 22. Ethical questions and their implication for QOL studies C.R.B. Joyce 373 23. Industry perspectives on quality of life Stuan R. Walker 383 24. A regulatory view J.R. Johnson 393 25. The cost effectiveness of pharmaceuticals George Teeling Smith 401 26. Requirements for health care purchasers Alan Maynard 413 27. The importance of quality of life in policy decisions Alan Williams 427 Appendices 441 1. Quality of Well-Being Scale 442 2. The Nottingham Health Profile 445 3. The McMaster Health Index Questionnaire 449 4. The Index of Health-Related Quality of Life (IHQL) 455 5. 15D Health-Related Quality of Life Questionnaire 464 6. EuroQol Valuation Task 471 Index 477 Preface It was over five years ago that the Centre for Medicines Research organized a workshop entitled "Quality of Life: Assessment and Application". This workshop brought together a unique group of participants, some of whom had been involved in studies on quality of life for well over a decade, whilst others were meeting the subject for the first time. This blend of experienced researchers and enthusiastic newcomers was a great stimulus to the discus sions which followed individual presentations as well as that resulting from the study groups. In the ensuing publication, a balance was sought between a consideration of the complex principles underlying the assessment of quality of life and the application of such assessments to specific clinical conditions which necessitated this approach. The organization in 1991 of a second workshop entitled "Quality of Life Assessment: Key Issues in the 1990s" resulted in a further consideration of the quality of life philosophy, concepts and key instruments together with an update on assessing quality of life in a number of major disease areas. Of particular importance was an examination of various viewpoints concerned with ethical questions and their implications, and quality oflife from industry, regulatory and health care purchasers' perspectives. As a result of this second workshop, the editors of the original book referred to above decided to produce a second edition with a number of updates and additional chapters. It is hoped that, as this topic becomes of increasing importance to the medical profession, the regulatory authorities and the pharmaceutical industry, this volume will be seen to be of value not only to experienced research workers but also to those who might be entering this field for the first time. I would particularly like to take this opportunity ofthanking my co-editor, Professor Rachel Rosser, for her important contribution to this volume and to Sandra Cox for her secretarial support in the editing of these proceedings. Lord Butterfield was kind enough to write the foreword to the original book and I am pleased to be able to include this as well in this second edition. Professor Stuart R. Walker September 1992 viii Foreword From the earliest times of the medical profession, it has been clearly understood that physicians may have to strike the balance between the treatments available to deal with the disease involved and the patient's well-being. This is reflected in the two names given to the medical demigod of ancient times - Asclepius in Greece - literally 'continuously gentle' and Aesculapius in Rome - 'pertaining to mistletoe with its semen-like restorative berry juice' 1. Asclepius was obviously deeply concerned with the patient's point of view, about the quality of his life, Aesculepius with action and treatment. We still have to face this dichotomy in managing patients today. Perhaps we are fortunate that as a generation the arrival of predictive science at the bedside has, almost within living memory, revolutionized medical treatment. Some shrewd observers link the revolution to the development of insulin therapy in the early 1920s. This created the need for the physician to learn how to vary the insulin dose between patients and, in the same patient with a different lifestyle. He also has to learn how to evaluate the variations clinically, or by blood glucose or glycosylated haemoglobin determinations. Before insulin, doses of drugs were, so to say, in the book, but since then medicines have been developed with an eye to the uniformity of dose that could be used in the formulation. Currently, predictive science is coming to assessments of the quality of life. This is a psychosocial revolution which may prove as exciting as the pharma cological therapeutic era of sixty years ago. Certainly this may be so for many patients who expect to be told what the doctors have in store for them, and increasingly therefore, for those responsible for developing new medicines. The editors of this monograph are therefore to be congratulated. They can be confident that they are launching an important publication covering, as it does, so many of the ideas and findings of the pioneers in the development of instruments for assessing quality of life, and of the thinking and philosophy about this side of medicine, which many patients and even some politicians thought was threatened with extinction. John Butterfield Cambridge See Greek Myths, Robert Graves, Cassell & Co. London, 1958, p. 176 ix Notes on contributors J P Anderson, PhD, is a medical specialist at the University of California, San Diego. Dr Anderson received his PhD degree from Harvard University and completed post doctoral training at Duke University. In 1974 he joined the San Diego group headed by Jim Bush and has continued to collaborate with Dr Kaplan on the development of a general approach to health outcome measurements. He has been particularly interested in methodological studies relevant to the Quality of Well-being Scale. Some of Dr Anderson's current projects involve patients with HIV disease, arthritis, hearing loss, stroke. Professor M Bergner, PhD, is Professor of Health Policy and Management and a member of the Health Services Research and Development Center at Johns Hopkins University. Her current research includes assessment of the impact of life support for critically ill hospitalized adults on health-related quality of life, development of a health status measure for children, and assessment of the clinical and functional outcomes of cataract surgery. M Bullinger, PhD, is assistant Professor at the Institute for Medical Psychology of the University of Munich. She has an appointment with the Biometrical Centre for Thera peutic Studies, University of Munich. Her interest has been oriented towards conceptual, methodological and practical contributions to the emerging field of quality of life assessment. Of the 85 papers and books she has published, the most recent ones pertain to quality of life assessment, but include also areas such as psychoneuroendocrinology, behavioural medicine and environmental psychology. Dr Bullinger is interested in developing a theoretical model of health related quality of life and in testing and developing quality of life instruments according to psychometric quality criteria. She is member of several working international working groups on instrument development and is interested in cross-cultural issues of quality of life research. Professor C Bulpitt, MD, MSc, FRCP, FFPM, is Professor of Geriatric Medicine at the Royal Postgraduate Medical School, Hammersmith Hospital. His research interests include clinical trials, measurement of health and the epidemiology of various clinical diseases, especially in the elderly. He has written a book entitled 'Randomised Controlled Clinical Trials', published by Martinus Nijhoff in 1983, and has edited a book entitled 'Epidemiology of Hypertension', Volume 6 of the 'Handbook of Hypertension' series published by Elsevier, in 1986. Professor L W Chambers, BA(Hons), MSc, PhD, is the Teaching Health Unit Coordinator in the Hamilton-Wentworth Department of Public Health Services, a teaching health unit affiliated with McMaster University. As a cross appointee, he is the Epidemiology Consultant in the Department and he holds the rank of Professor in the Department of Clinical Epidemiology and Biostatistics, Faculty of Health Sciences, McMaster University, Hamilton, Ontario. In addition, he is the Director of the R Samuel xi xii QUALITY OF LIFE ASSESSMENT: KEY ISSUES IN THE 19905 McLaughlin Centre for Gerontological Health Research in the Faculty of Health Sciences. Dr Chambers' areas of interest are: quantification of quality of health care assessment; development of measures of health-related quality oflife; research methodology in health sciences (teaching and experimentation); health care controlled trials. and, continuing education for users of health research information. Professor R A Deyo, MD, MPH, is a member Director of the Northwest Health Services Research and Development Field Program at the Seattle, Washington Veterans Affairs Administration Medical Center. He is also Professor of Medicine and of Health Services at the University of Washington. His current research interests include the measurement of health status in clinical settings; management of common musculoskeletal diseases, and evaluation of common medical practices. He is the author of 85 articles and book chapters in the medical and health services literature. These have covered the use of health status questionnaires in rheumatoid arthritis, the diagnosis and management of low back pain, and the methodology of health status assessment in musculoskeletal diseases. P Erickson, MS, is Chief of the Clearinghouse of Health Indexes, Office of Analysis and Epidemiology, National Center for Health Statistics, US, DHHS. Her current responsibilities include editing the Bibliography on Health Indexes and analysing national data on health-related quality of life for epidemiologic and evaluative purposes. Her publications include "Health Status and Health Policy: Quality of Life in Health Care Evaluation and Resource Allocation" co-authored with Donald Patrick and published by Oxford University Press, 1993. In addition, she serves as consultant to The On-Line Guide to Quality-of-Life Assessment (OLGA). A Fletcher, PhD, is a Senior Lecturer in Epidemiology at the Royal Postgraduate Medical School. Current ongoing research includes the measurement of quality oflife in a range of contexts from clinical trials in hypertension, heart failure and diabetes to acute geriatric wards. She is also involved in trials and studies of factors influencing survival in hypertensive patients. Main current interest is in the epidemiology of the elderly with a special emphasis on the prevention of disease. T G Ganiats, MD, is an associate professor, Chief of the Division of Family Medicine and Vice-chair of the Department of Community and Family Medicine at the University of California San Diego (UCSD) School of Medicine. Dr Ganiats received his MD degree from UCSD in 1978. In 1981 he graduated from his family practice residency at UCSD where he was Chief Resident. His practice includes the full range of family practice, from prenatal care through geriatrics. His research interests are in health technology assessment, especially cost/utility analysis. He is an active contributor to the literature in family medicine and medical decision-making. One of his current projects is an evaluation of outcomes in stroke prevention using the Quality of Well-being Scale. S M Hunt, MA, PhD, FRIPHH, FRSM, was formerly Senior Research Fellow at the University of Edinburgh and is now a partner in Galen Research & Consultancy. She divides her interests between measurement issues related to health and socio-epidemio logical investigations of the relationship between living conditions and ill health. With Steve McKenna, she has recently completed a measure of quality of life, based upon a new conceptual model, for use in depression. She is currently engaged in the development of health measures appropriate to the diversity of European cultures and languages, a measure of the impact of childhood illness on the family and an index of distress/depend ency.

See more

The list of books you might like

Most books are stored in the elastic cloud where traffic is expensive. For this reason, we have a limit on daily download.