SELF REPORTED FACTORS INFLUENCING ADULT PATIENTS ADHERENCE TO ANTIRETROVIRAL THERAPY AT ST RITA S HOSPITAL

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SELF REPORTED FACTORS INFLUENCING ADULT PATIENTS ADHERENCE TO ANTIRETROVIRAL THERAPY AT ST RITA S HOSPITAL VICTOR NNANNA ONWUKWE A Research Report Submitted to the Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, in Partial Fulfillment of the Requirements for the Degree of Master of Family Medicine Johannesburg 2008

ii DECLARATION I, VICTOR NNANNA ONWUKWE declare that this report is my own work. It is being submitted for the Degree of Master of Family Medicine in the University of the Witwatersrand, Johannesburg. It has not been submitted before for any degree or examination at this or any other University. Day of, 2008.

iii DEDICATION In Memoriam: MRS. R.E. ONWUKWE (14/06/1918 31/07/1999) for doing everything possible to ensure my success in her lifetime And EMMAN EKE KALU for starting me on this particular phase of my journey.

iv ACKNOWLEDGEMENTS Many people have contributed in various ways to my development in life in general and my academic development specifically. This has indirectly led to the completion of this study and I wish to thank all of you for contributing in one way or another. I am mostly indebted to Professor Bruce Sparks for being the best teacher who has ever taught me and also for his patience and dedication to his work. Emulating his exemplary life has continuously motivated me. I am very grateful to Dr Anne Wright who played a pivotal role in ensuring that I completed the course work component of the MFammed Degree and without whom it would have been impossible to complete this study. My sincerest thanks go to Dr Claire van De Venter for her understanding, expert supervision, very important comments and her ability to share and impart knowledge. I thank you also for the patience and restraint shown to me throughout the duration of this work. My thanks also go to Dr Tonye Douglas whose belief in me always motivates me to be at my best. You have been a brother, a dear friend and a colleague all rolled into one.

v This research work depended on assistance from many people and I am particularly grateful to Braimoh Bello for his assistance in the statistical analysis, Dr Mary Kawonga for her incivisive comments at the initial stages of the write up, Drs Simeon Odugwu, Damien Eze and Emeka Ajaero for their criticisms during the protocol development and also, during the first draft of the final report. My acknowledgements and thanks to my study partner and friend, Dr Owo Ikwa Owo, my friends Abiodun Mustapha and family, Dr. Dele Oranyeli, Dr Ike Adi, Dr Onyekwelu Bielu, Benedict Chikezie, Emmanuel Opara and Gabriel Onyemaobi for their continuous support through the years. I thank Professor Ian Couper who not only shared his vast knowledge and rich experience in rural health but also taught us amongst other things not to be afraid to admit our failures and also to share these failures with our colleagues so that all can learn from it, a lesson which has helped me immensely in my practice. I also thank the members of staff of the Department of Family Medicine, University of the Witwatersrand, Johannesburg, especially Dr Shabir Moosa, Dr Sherwin Kathawaroo, Dr Richard Naidoo, Professor Susan Black, Dr Minakshi Jivan, Mrs Joan Strachan and Ms Miriam Anderson who gave so much of themselves to ensure our success in life. And I must not forget to pay tribute to Professor Gboyega Ogunbanjo who has always provided a tremendous positive influence on my life.

vi To Dr Charles Clark my mentor and my colleagues at St Rita s hospital especially Dr Roland Diamonika Monika and family, Prof Jaques Louis van Bogaert, Dr Nomsa Mogosetsi and the staff members at Dira go Direge clinic, I thank you all. Finally my sincerest gratitude go to my dearest wife, Maria Manuela, whose love, understanding and constant support has kept me going all these years and to my children, Nnenna and Jo-Ike, whose constant interruptions delayed this work but mostly for providing me with the greatest joy a man can have, the joy of fatherhood. VICTOR NNANNA ONWUKWE

vii ABSTRACT The cornerstone in the fight against HIV/AIDS is prevention followed by the access to and use of highly active antiretroviral treatment (HAART). Adherence is the greatest patient- enabled predictor of treatment outcome for the patients on HAART, as good adherence leads to a decrease in disease progression and death. There is no gold standard in the measurement of adherence. Also, factors that influence adherence and hence the prevalence of adherence differ across different settings making it necessary to determine local adherence prevalence as well as factors that might impact on it. This was a cross sectional study which assessed the prevalence of one- week adherence to antiretroviral therapy at St Rita s hospital through an abridged version of the questionnaire developed by the Adult Aids Clinical Trials Group in the United States. Results from the questionnaires were compared to the results from a decrease in plasma viral load to undetectable limits within six months. The study found out that the prevalence of one- week adherence by self-report was 96.8% (95% CI: 93.2 98.9%). Using a decrease in viral load to undetectable limits within six months of initiating treatment as a tool to assess

viii adherence, the prevalence in this study was 96%. A combined prevalence of 94% was found for this study. These results were identical to a few results locally but it was much higher than most local studies. The explanation for this apparent higher adherence rate might be that the study site has not reached its maximum capacity for the delivery of service as it is still operating at just below the staff/patient ratio recommended by the Department of health. The study also found out that being a member of an AIDS support group was a facilitator to adherence while lack of adherence counselling and monitoring is a barrier. Based on these findings it is therefore recommended that measures should be put in place to ensure improving existing adherence counselling and monitoring, encouraging patients to belong to at least one AIDS support group, more decentralization of antiretroviral therapy roll out to the districts that are yet to roll out and providing financial assistance through improved access to disability grants for those who qualify and income generating activities for the unemployed that do not qualify for disability grant.

ix TABLE OF CONTENTS Page No: DECLARATION DEDICATION ACKNOWLEDGEMENTS ABSTRACT TABLE OF CONTENTS LIST OF APPENDICES LIST OF TABLES LIST OF FIGURES ii iii iv vii ix xii xiii xiv CHAPTER 1 INTRODUCTION 1 1.1 BACKGROUND 1 1.2 STATEMENT OF THE PROBEM 5 1.3 JUSTIFICATION FOR THE STUDY 6 CHAPTER 2 LITERATURE REVIEW 8 2.1 Rates of Adherence 8 2.2 Factors Influencing Adherence to Antiretroviral Therapy 12 2.3 Measurement of Adherence 16 CHAPTER 3 METHODS 23 3.1 DEFINITION OF TERMS 23 3.2 STUDY AIM 23

x 3.3 STUDY OBJECTIVES 23 3.4 STUDY DESIGN 24 3.5 STUDY SETTING 24 3.6 STUDY POPULATION 26 3.7 SAMPLING 26 3.8 DATA COLLECTION TOOL 28 3.9 DATA COLLECTION PROCESS 30 3.9.1 Phase 1: Face-to-face Interviews 30 3.9.2 Phase 2: Record Review 30 3.10 PILOT STUDY 31 3.11 SOURCES OF BIAS 31 3.12 ETHICS 32 3.13 DATA ANALYSIS 33 CHAPTER 4 RESULTS 4.1 SOCIO-DEMOGRAPHIC CHARACTERISTICS OF 35 STUDY PARTICIPANTS 4.2 SELF REPORTED PREVALENCE OF ARV ADHERENCE 37 4.2.1 Ever Missed/Skipped Medication 37 4.2.2 Prevalence of One-week Adherence 38 4.3 CORRELATION BETWEEN SELF-REPORTED ADHERENCE AND PATIENT VIRAL LOAD 38

xi 4.3.1 Viral Load Results 38 4.3.2 Sensitivity and Specificity of Self-reported Adherence 40 4.4 PATIENT REPORTED FACTORS THAT INFLUENCE 43 ADHERENCE TO ARV THERAPY 4.4.1 Determinants of Adherence 41 4.4.1.1 Socio-demographic variables 41 4.4.1.2 Other important variables 43 4.4.1.3 Psychological factors 44 4.4.2 Reasons for Non-adherence 44 CHAPTER 5 DISCUSSION 5.1 SOCIO-DEMOGRAPHIC CHARACTERISTICS 46 5.2 PREVALENCE OF ARV ADHERENCE 48 5.2.1 Prevalence of One-week Self-reported Adherence 48 5.2.2 Prevalence of Adherence by Viral Load 50 5.3 REASONS FOR NON-ADHERENCE 52 CHAPTER 6 CONCLUSIONS AND RECOMMENDATIONS 6.1 CONCLUSIONS 54 6.2 RECOMMENDATIONS 55 REFERENCES 56

xii LIST OF APPENDICES APPENDIX 1: APPENDIX 2: APPENDIX 3: APPENDIX 4: APPENDIX 5: APPENDIX 6: APPENDIX 7: APPENDIX 8: Questionnaire for patients interviews Subject information for participants Consent form for participants Principal researcher s contact information Application to the CEO, St. Rita s Hospital for study approval Approval from the CEO, St. Rita s Hospital Approval from the HOD Limpopo Department of Health Patient adherence record assessment form

xiii LIST OF TABLES Page No: Table I 27 Table II 36 Table III 37 Table IV 38 Table V 39 Table VI 40 Table VII 40 Table VIII 42 Table IX 44

xiv LIST OF FIGURES Page No: Figure 1 Reasons for non-adherence 45