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Surveillance of HIV Infection in Scotland

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Surveillance of HIV Infection in Scotland Surveillance of HIV Infection in Scotland ( A decade of HIV surveillance at SCIEH: 1984 -1994) Gwendolyn Muriel Allardice, M.Sc. Thesis submitted to the University of Glasgow for the degree of Doctor of Philosophy Department of Public Health February 1996 ProQuest Number: 13832499 All rights reserved INFORMATION TO ALL USERS The quality of this reproduction is dependent upon the quality of the copy submitted. In the unlikely event that the author did not send a com plete manuscript and there are missing pages, these will be noted. Also, if material had to be removed, a note will indicate the deletion. uest ProQuest 13832499 Published by ProQuest LLC(2019). Copyright of the Dissertation is held by the Author. All rights reserved. This work is protected against unauthorized copying under Title 17, United States C ode Microform Edition © ProQuest LLC. ProQuest LLC. 789 East Eisenhower Parkway P.O. Box 1346 Ann Arbor, Ml 48106- 1346 'f&U (o5<$^ Cf)i 6LASS0^7 !UNIVERSL / > TT377 "Y * Abstract The objectives of this thesis are to describe, analyse and evaluate the principal HIV surveillance schemes co-ordinated at the Scottish Centre for Infection and Environmental Health (SCIEH) between 1984 and 1994. Chapter one begins with a brief review of surveillance, including examples of surveillance schemes and their benefits, followed by a detailed statement of the aims of this thesis. The chapter continues with a review of the first reports of AIDS, the discovery of HIV, the transmission of HIV, the immune response to HIV, and the development of a test for HIV antibodies. A brief introduction to the principal HIV surveillance schemes is given, with a description of the role of each scheme in the context of the overall HIV surveillance programme for Scotland. This is followed by an outline of the framework used, in chapter eight, to evaluate each surveillance scheme. Finally, the chapter concludes with a methods section. Chapters two to six all follow a similar pattern, each concentrating on one particular HIV surveillance scheme. These are the AIDS Register (chapter two), HIV Register (chapter three), Denominator Study (chapter four), UAT surveillance (chapter five) and the CD4 Study (chapter six). Each chapter contains a detailed description of the surveillance scheme and an analysis of the data collected. Chapter seven examines computer linkage of these HIV surveillance schemes, both with one another and with data from other surveillance schemes. It describes linkages that have already taken place, analyses results from them, and highlights areas for future work. Chapter eight begins with an evaluation of key attributes of each of the HIV surveillance schemes described in chapters two to six. It continues with a demonstration of the importance of the linked HIV/AIDS Register, together with the CD4 and GUM Studies, in identifying where new infection may be occurring, and in estimating the prevalence of HIV infection. It also addresses a variety of issues regarding the performance, value and future role of the principal HIV surveillance schemes in Scotland. Acknowledgements At the beginning of this thesis, it is appropriate to record my gratitude to the many people who helped to develop the HIV surveillance schemes in Scotland, and to those who currently support them (see appendix). Particular thanks are due to Professor D. Reid, Dr D. Goldberg and Dr J. Emslie. Thanks are also due to Dr B. Davis for her contribution to the reorganisation of the HIV Register, and to Ms L. Ashton for her contribution to the development of the CD4 Study. I also thank my two supervisors, Professor D. Reid and Mr. H. Gilmour, for their support, advice and encouragement. Throughout my research I have been fortunate to have received statistical advice and assistance from many colleagues. In particular I acknowledge the help of Dr. K. Fielding in the analysis of the survival experiences of people with AIDS, Professor G. Raab for her help in the logistic regression analysis of persons requesting an HIV test, and Dr. S. Gore for several helpful discussions. Last, but certainly not least, my thanks go to my husband Neil for his constant encouragement and understanding. Contents Page Number A bstract................................................................................................... ii Acknowledgements ............................................................................... iii List of Chapter Sections .......................................................................vi List of Tables ..........................................................................................xiii List of Figures .........................................................................................xvi S um m ary ................................................................................................ xix Chapter 1: Introduction ........................................................................ 1 Chapter 2: The AIDS Register............................................................ 24 Chapter 3: The HIV Register.............................................................. 46 Chapter 4: The Denominator Study ................................................... 65 Chapter 5: Unlinked Anonymous Testing ........................................ 79 Chapter 6: The CD4 Study................................................................... 95 Chapter 7: Computer Linkage of HIV Surveillance Schemes ....... 106 Chapter 8: Evaluation of HIV Surveillance at SCIEH (1984-1994) ..115 Epilogue ................................................................................................... 130 Tables........................................................................................................131 Figures ......................................................................................................171 References ............................................................................................... 216 Glossary ................................................................................................... 229 Appendix .................................................................................................. 231 Contents of back pocket of thesis (next page) Contents (contd.) Contents of back pocket of thesis No. Item See Section 1 Location of health boards in Scotland 2.1.4 2 AIDS-case report form 2.1.8 3 ANSWER; 28th April, 1995 2.8; 3.8 4 HIV test request form 3.2.1 5 UAT consent leaflet 5.1.1 6 GUM Study; survey form 5.2.1 7 CD4 Study; immunological request form 6.1.3 8 Poster; CD4 count at HIV diagnosis 7.3.3 List of Chapter Sections Page Number Chapter 1: Introduction 1.1 B ackground ..................................................................................... 2 1.1.1 Introduction to surveillance ............................................. 2 1.1.2 Examples of surveillance schemes ................................. 2 1.2 The aims of this thesis................................................................. 5 1.3 First reports of AIDS .................................................................... 7 1.3.1 AIDS cases world-wide ...................................................... 7 1.4 The discovery of HIV ..................................................................... 8 1.4.1 Viruses and retroviruses .................................................. 8 1.4.2 Immune response .............................................................. 9 1.4.3 Immune response to HIV infection ................................. 9 1.4.4 Transmission of HIV ......................................................... 9 1.4.5 Progression of HIV infection ............................................ 10 1.4.6 HIV antibody test ...............................................................10 1.4.7 HIV infection world-wide ..................................................11 1.5 Surveillance of HIV infection in Scotland ................................ 12 1.5.1 The AIDS Register..............................................................12 1.5.2 The HIV Register................................................................13 1.5.3 The Denominator Study ....................................................13 1.5.4 Reporting of mortality from HIV infection ................... 14 1.5.5 Unlinked anonymous testing for HIV ............................14 1.5.6 The CD4 Study................................................................... 15 1.6 Public health importance of HIV infection ................................ 16 1.7 Government response to HIV infection .....................................17 1.7.1 All-Party Parliamentary Group on AIDS ..................... 17 1.7.2 Ministerial task force ........................................................ 17 1.7.3 Public health strategies....................................................18 1.8 Evaluation of surveillance schemes ........................................... 19 1.8.1 Utilisation of surveillance .................................................19 1.8.2 Attributes of a surveillance scheme ...............................20 1.9 Methods ............................................................................................22 vi List of Chapter Sections (contd.l Page Number Chapter 2 : The AIDS Register 2.1 Introduction to AIDS surveillance in the United Kingdom ...25 2.1.1 First AIDS-case definition ............................................... 25 2.1.2 First reported AIDS cases in Scotland...........................26 2.1.3 Public Health Acts..............................................................26
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