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Epidemiological Evaluation of the National Sickle Cell Screening Program in the Republic of Uganda

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Epidemiological Evaluation of the National Sickle Cell Screening Program in the Republic of Uganda The Texas Medical Center Library DigitalCommons@TMC UT School of Public Health Dissertations (Open Access) School of Public Health 12-2019 EPIDEMIOLOGICAL EVALUATION OF THE NATIONAL SICKLE CELL SCREENING PROGRAM IN THE REPUBLIC OF UGANDA ARIELLE G. HERNANDEZ Follow this and additional works at: https://digitalcommons.library.tmc.edu/uthsph_dissertsopen Part of the Community Psychology Commons, Health Psychology Commons, and the Public Health Commons EPIDEMIOLOGICAL EVALUATION OF THE NATIONAL SICKLE CELL SCREENING PROGRAM IN THE REPUBLIC OF UGANDA by ARIELLE G. HERNANDEZ, MPH APPROVED: CHARLES DARKOH, PHD RUSSELL E. WARE, MD, PHD WENYAW CHAN, PHD SHERYL A. MCCURDY, PHD YANG XIA, MD, PHD DEAN, THE UNIVERSITY OF TEXAS SCHOOL OF PUBLIC HEALTH i Copyright by Arielle G. Hernandez, MPH 2019 ii DEDICATION To my most near and dear ones: Mom, Dad, and Kali. iii EPIDEMIOLOGICAL EVALUATION OF THE NATIONAL SICKLE CELL SCREENING PROGRAM IN THE REPUBLIC OF UGANDA By ARIELLE G. HERNANDEZ MPH, University of Cincinnati College of Medicine, 2016 BA, University of Kansas, 2011 Presented to the Faculty of The University of Texas School of Public Health in Partial Fulfillment of the Requirements for the Degree of DOCTOR OF PHILOSOPHY THE UNIVERSITY OF TEXAS SCHOOL OF PUBLIC HEALTH Houston, Texas December 2019 iv ACKNOWLEDGEMENTS As a firm believer that you are the sum of the people with whom you surround yourself, there are many incredible people around me who contributed to the completion of this dissertation. First and foremost, I want to thank my mentor and Dissertation Supervisor, Dr. Russell Ware. His belief and trust in me are the ultimate motivators. He is a fearless leader with a lot of heart and humor. To feel challenged, supported, cared for is a very special alchemy, so I’m not sure how I got so lucky. I am looking forward to many more years of working with and learning from Dr. Ware. A special thank you to Dr. Charles Darkoh. His guidance has been invaluable since day one of my program as both my Academic Advisor and Dissertation Committee Chair. He has allowed me to cry in his office on multiple occasions and laughs at most of my jokes, which is the support I didn’t know I needed in this process. I greatly appreciate the valuable time, expertise, and encouragement provided by my other committee members: Dr. Wenyaw Chan, Dr. Sheryl McCurdy, Dr. Yang Xia, and Dr. Lu-Yu Hwang. I am very grateful to my Ugandan colleagues for a wonderful research partnership and friendships that make the thousands of miles between Uganda and Texas feel so much closer. Their dedication to their work and country is incredibly inspiring. Many, many thanks to my family for being a constant source of love and support all my life. v TABLE OF CONTENTS LIST OF TABLES .......................................................................................................................x LIST OF FIGURES .....................................................................................................................xii LIST OF APPENDICIES .............................................................................................................xiii BACKGROUND ........................................................................................................................1 Molecular Basis and Pathophysiology of Sickle Cell Anemia ............................................1 Origins of the Sickle Mutation ..........................................................................................4 Global Burden and Distribution ........................................................................................7 Diagnosis ...........................................................................................................................10 Complications and Co-morbidities ....................................................................................12 Genetic Modifiers ..............................................................................................................15 Treatment .........................................................................................................................17 Preliminary Data................................................................................................................19 Sickle Cell Disease in Uganda........................................................................................19 Sickle Cell Screening in High-Burden Districts ..............................................................26 Public Health Significance .................................................................................................30 SPECIFIC AIMS ........................................................................................................................32 METHODS ...............................................................................................................................33 Aim 1 .................................................................................................................................33 Study Design .................................................................................................................33 Study Setting .................................................................................................................33 Study Population ..........................................................................................................33 Data Collection .............................................................................................................34 Data Analysis.................................................................................................................35 Aim 2 .................................................................................................................................36 Study Design .................................................................................................................37 Study Setting .................................................................................................................37 Study Population ..........................................................................................................37 Data Collection .............................................................................................................37 Data Analysis.................................................................................................................37 Aim 3 .................................................................................................................................39 Study Design .................................................................................................................39 Study Setting .................................................................................................................39 Study Population ..........................................................................................................40 Sampling, Sample Size, Recruitment ............................................................................41 Data Collection .............................................................................................................42 Data Analysis .................................................................................................................43 Human Subjects Considerations .......................................................................................43 JOURNAL ARTICLE ONE ..........................................................................................................45 Trends in Sickle Cell Trait and Disease Screening in the Republic of Uganda, 2014-2019 Introduction ..................................................................................................................45 Methods ........................................................................................................................47 Results ...........................................................................................................................49 vi Discussion......................................................................................................................64 Conclusion .....................................................................................................................67 JOURNAL ARTICLE TWO .........................................................................................................73 Operational Analysis of the National Sickle Cell Screening Program in the Republic of Uganda Introduction ..................................................................................................................73 Methods ........................................................................................................................75 Results ...........................................................................................................................78 Discussion......................................................................................................................92 Conclusion .....................................................................................................................97 JOURNAL ARTICLE THREE .......................................................................................................98 Healthcare Provider Experiences with Sickle Cell Screening in the Republic of Uganda Introduction ..................................................................................................................98
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