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  • Using Patient Reported Outcomes to Improve Health Care

  • Using Patient Reported Outcomes to Improve Health Care

    John Appleby

    Nancy Devlin

    David Parkin

  • This edition first published 2016 © 2016 by John Wiley & Sons Ltd

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    Library of Congress Cataloging-in-Publication Data

    Appleby, John, 1958- , author. Using patient reported outcomes to improve health care / John Appleby, Nancy Devlin, David Parkin. p. ; cm. Includes bibliographical references and index. ISBN 978-1-118-94860-6 (cloth) I. Devlin, N. J. (Nancy J.), author. II. Parkin, David W., author. III. Title. [DNLM: 1. Patient Outcome Assessment. 2. Data Collection. 3. Delivery of Health Care–organization & administration. 4. Quality Improvement. W 84.41] R853.O87 362.1072’7–dc23 2015029809 A catalogue record for this book is available from the British Library.

    Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books.

    ISBNs

    paperback: 978-111-894860-6 ePDF: 978-111-894859-0 epub: 978-111-894858-3

    Cover image: GettyImages-185008611/Health Questionaire/Vishwanath Bhat Gettyimages-493216259/Surgeons performing surgery in operation theatre/Morsa Images

    Set in 9/11 and Frutiger LT Std by Aptara Inc., New Delhi, India

    1 2016

    http://www.wiley.com/wiley-blackwell

  • v

    Contents

    Foreword, Sir Bruce Keogh, vi Foreword, An international perspective, Professor Kalipso Chalkidou,vii Acknowledgements, ix

    1 Introduction, 1

    2 A primer on patient reported outcomes, 9

    3 Patients: information and choice, 27

    4 Clinicians: clinical decision making, 41

    5 Hospitals: managing clinical quality, 51

    6 Commissioners: quality, value for money and fairness, 70

    7 Regulation, value for money and productivity, 75

    8 Where next for patient reported outcomes?, 88

    Appendix 1 PROM questionnaire that is currently completed by patients after undergoing varicose vein surgery, 91

    Appendix 2 The EQ-5D-5L©, 101

    Appendix 3 Dr Tim Hughes’ shared decision-making aid for patients, 103

    Index, 107

  • vi

    Foreword

    Sir Bruce Keogh National Medical Director NHS England London

    The cartoonist’s caricature depicted by the caption, ‘the operation was a success, but the patient died’, defines the problem that patient reported outcome measures aspire to solve – namely a deeper understanding of the relationship between technical and perceived out- comes for a clinical intervention. Patients and surgeons enter into a deal to try and solve a patient’s particular problem but expectations are sometimes different. Patient reported outcome measures offer the prospect of employing different and sophisticated tools for measuring and defining a spectrum of success from a patient standpoint which will inevita- bly facilitate greater patient participation in the decision-making process. This is in keeping with a wider secular trend to give individuals more control over different aspects of their lives, transactions and health. When linked to pre-operative symptoms, procedural data and other clinical outcome measures they offer addition objective measures that could provide a valuable tool for refining and improving surgical interventions and defining their relative value.

    The history of surgical outcome measurement has been driven by a desire to improve patient outcomes and hindered by fears of how comparative outcomes may be used. Unrav- elling the relative utility of different PROMs to patients, clinicians or institutions will require rigorous analysis. This book does just that. It summarises the current state of knowledge, ex- poses the gaps, explores our experience in the English National Health Service and presents opportunities for future endeavour.

  • vii

    Foreword

    An international perspective Professor Kalipso Chalkidou Director, NICE International London

    In December 2012 the General Assembly of the United Nations adopted a resolution on universal health care, urging member states to establish health care systems that offer their people access to care they need whilst protecting them from impoverishment due to cata- strophic spending. Critics of this global movement claim it is unaffordable – or that what could be afforded by most countries is likely to be of too poor a quality. This is not surprising given that groups such as the World Bank and the World Health Organization have tradition- ally focused on mechanisms for financing for universal health care. Quality, as linked to costs and affordability in the context of expanding access to needed care, has largely been omitted from the discussion.

    Patient reported outcomes (PROs) can change all this. A pragmatic measure of quality, they link effectiveness with efficiency of care, focusing on: ‘…the impact that a person’s state of health has on his or her overall life.’ And in doing so is perhaps one of the most powerful tools for supporting nations’ efforts to attain and sustain universal health care.

    Quality can make or break universal health care. In developing countries, weak clinical governance structures, limited or no professional (self)-regulation, badly behaving pharma and devices industries and confused and distortionary payment systems fuel supply-induced demand, leading to overuse, waste, unsatisfactory pa- tient experiences and bad outcomes.

    Doctors in China and India will tell you their patients are ‘forcing’ them to prescribe IV antibiotics whatever the underlying condition. In Vietnam, providers claim their clients are upset if not offered an MRI scan when admitted to hospital; again, with the underlying condition being of little relevance to the treatment offered. And in many Latin American countries such as Colombia and Costa Rica, patients and their families take public payers to court for not offering them the latest cancer drug, even when such drugs remain unlicensed in the United States or Europe or of poor value for money – even for richer nations.

    Patient reported outcomes can challenge all this. They can empower patients in mak- ing choices ab

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