People with Multiple Sclerosis

People with Multiple Sclerosis

People with Multiple Sclerosis Condition, Challenges and Care Paul J. Bull Independent Researcher, UK

Paul J. Bull 2015 All rights reserved. No reproduction, copy or transmission of this publication may be made without written permission. No portion of this publication may be reproduced, copied or transmitted save with written permission or in accordance with the provisions of the Copyright, Designs and Patents Act 1988, or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency, Saffron House, 6 10 Kirby Street, London EC1N 8TS. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages. The author has asserted his right to be identified as the author of this work in accordance with the Copyright, Designs and Patents Act 1988. First published 2015 by PALGRAVE MACMILLAN Palgrave Macmillan in the UK is an imprint of Macmillan Publishers Limited, registered in England, company number 785998, of Houndmills, Basingstoke, Hampshire RG21 6XS. Palgrave Macmillan in the US is a division of St Martin s Press LLC, 175 Fifth Avenue, New York, NY 10010. Palgrave Macmillan is the global academic imprint of the above companies and has companies and representatives throughout the world. Palgrave and Macmillan are registered trademarks in the United States, the United Kingdom, Europe and other countries. ISBN 978-1-349-56851-2 DOI 10.1057/9781137457066 ISBN 978-1-137-45706-6 (ebook) This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources. Logging, pulping and manufacturing processes are expected to conform to the environmental regulations of the country of origin. A catalogue record for this book is available from the British Library. A catalog record for this book is available from the Library of Congress.

For Christine

Contents List of Figures List of Tables Acknowledgements List of Abbreviations viii ix xi xiii 1 Introduction 1 2 Multiple Sclerosis: A Brief Overview of the Illness 19 3 Research on People with MS: Definitions, Data Sources and Methodologies 41 4 What Type of Person Suffers from MS? 83 5 How Many People Have MS? A Case Study of the UK 110 6 The Impact of MS 159 7 The Care of People with MS 213 8 Conclusion 260 Notes 273 References 276 Index 301 vii

List of Figures 5.1 Worldwide prevalence of MS by nation state 112 5.2 UK regional MS prevalence rates 117 5.3 MS admissions to NHS hospitals in Scotland 1997 2009 by Health Board Area 129 5.4 MS admissions to NHS hospitals in England 1998 2005 by Strategic Health Authority Area 140 6.1 Hypothetical impact of MS on a person s life 166 viii

List of Tables 1.1 Selected neurological conditions in the UK 12 2.1 Type of MS by selected regional and national survey 28 3.1 The number of PwMS diagnosed using the A&M and poser criteria for selected regional populations in the UK 47 3.2 The definition of MS used in recent UK regional studies 55 3.3 The most important source for recent regional surveys of PwMS 57 4.1 Surveys of PwMS 84 4.2 Female to male ratios in regional MS studies since 1985 86 4.3 The ages of PwMS: summary statistics from regional research 94 4.4 The distribution of PwMS and the population of the countries of the UK by age group 96 4.5 Distribution of PwMS by age group and female/male ratios for selected regions 97 5.1 Estimates of the number of PwMS in the four countries of the UK in 2010 115 5.2 The principal regional MS prevalence studies published since 1985 120 5.3 UK regional MS prevalence rates by year of study 123 5.4 UK regional MS prevalence studies ranked by prevalence rate 124 5.5 Population of Northern Ireland and the north of Northern Ireland MS study area: selected characteristics in 2001 131 5.6 Regional MS annual incidence rates in the UK 143 5.7 Prevalence of PwMS/100,000 in 1981 by region in Australia and place of birth 154 6.1 Kurtzke s Expanded Disability Status Scale 168 6.2 Factors aiding successful and unsuccessful adjustment to MS 178 6.3 Domains of care for people with MS as identified by Gruenewald et al. (2004) 181 6.4 The MS Impact Scale (MSIS-29) 183 6.5 Original areas of importance identified by the LMSQoLS 184 6.6 LMSQoL scores by disease state and ambulation status 186 ix

x List of Tables 6.7 Average group scores for the physical and psychological components of the MSIS-29 188 6.8 The ten subject-event combinations producing most and least subjective happiness 201 6.9 Mean annual costs per PwMS by category ( s in 2006/7) 202

Acknowledgements Trying to write a book that covers a vast amount of research within a strict word limit presents the author with the awkward task of deciding what to include and what to exclude. In this case this issue was solved in a pragmatic way by concentrating on the research I knew best, the research undertaken mainly on people with multiple sclerosis in the United Kingdom. This was not out of any arrogance that believed British research to be best because I know it is not, but more out of my own limited cerebral capacity that could cope with little more. I must therefore apologise for any excellent research on people with MS I have omitted. The early reading and ideas sorting for this book became possible through a small research grant from the MS Society and an Honorary Research Fellowship at the University of Sheffield. I would like to thank both organisations for their support and especially their library staffs for sourcing many obscure references. I would also like to thank the library staff of my local branch library in Prettygate Colchester for undertaking a similar task. Without their dedicated bibliographic skills, this book would never have been produced. The skills of Ed Oliver, cartographer at the School of Geography, Queen Mary University of London, in producing the maps in Chapter 5 and the figure in Chapter 6 must also get a special mention. Throughout the writing of this book many people offered advice, provided information and commented on various chapters. I would like to thank them all for their assistance. They include Reece Andrew, Wendy Baird, Verity Brack, Sarah Briggs, Doug Brown, Chris Bull, Andrew Church, Lee Dunster, Isabel Dyck, Gill Green, Beth Greenhough, Siobhan Hart, Barbara Harvey, Ed Holloway, Isla Mackenzie, Stuart Nixon and Steve Royle. Two further scholars, Iain Chalmers and Tony Gatrell, deserve particular thanks because without their wise invaluable counsel and warm encouragement at strategic moments this book may never have been completed. Thanks must also go to the editorial and production teams at Palgrave Macmillan for making this book a reality. It is also important to acknowledge a number of copyright permissions including the MS Society for xi

xii Acknowledgements the front cover picture, the map in Figure 5.1 based on information from the Atlas of MS, published by the Multiple Sclerosis International Federation and Eiona Roberts for her poem in Chapter 1. Finally, I must thank my wife Christine, for allowing me the time and space to write this book and, when the work was going badly, for putting up with my bad moods with such grace and understanding. I owe her far more than these feeble words can say.

List of Abbreviations A&M Allison and Millar ABI acquired brain injury ARMS Action into Research for Multiple Sclerosis (former MS charity in UK) BMS benign MS CCSVI chronic cerebrospinal venous insufficiency CIS clinically isolated syndrome CNS central nervous system CSF cerebrospinal fluid DMD disease modifying drugs EBV Epstein-Barr virus EDSS Expanded Disability Status Scale GHS General Household Survey GP general practitioner GPRD general practice research database IM infectious mononucleosis MND motor neurone disease MRI magnetic resonance imaging MS multiple sclerosis MSIF MS International Federation MwMS members of the MS Society with MS NARCOMS North American Research Committee on MS NHS National Health Service (UK) NHNN National Hospital for Neurology and Neurosurgery NICE National Institute for Health and Care Excellence NSF National Service Framework PCT primary care trust PRISMS Prevention of Relapses and Disability by Interferon beta-1a Subcutaneously in Multiple Sclerosis PPMS primary progressive MS PwMS people with multiple sclerosis RCP Royal College of Practitioners RRMS relapsing remitting MS SPMS secondary progressive MS SRD sustained reduction in disability xiii

xiv List of Abbreviations SWIMS UK US VEP WHO South West Impact of MS Project United Kingdom United States visual evoked potential World Health Organization