The Use of Self-Sampling for HPV Testing to Improve Cervical Cancer Screening Participation Among Under- Screened Women Living in Rural Ontario
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The Use of Self-sampling for HPV Testing to Improve Cervical Cancer Screening Participation among Under- screened Women Living in Rural Ontario by Catherine Sarai Racey A thesis submitted in conformity with the requirements for the degree of Doctorate of Philosophy Graduate Department of Public Health Sciences University of Toronto © Copyright by Catherine Sarai Racey 2017 The Use of Self-sampling for HPV Testing to Improve Cervical Cancer Screening Participation among Under-screened Women Living in Rural Ontario Catherine Sarai Racey Doctorate of Philosophy Graduate Department of Public Health Sciences University of Toronto 2017 Abstract Papanicolaou (Pap) testing has greatly reduced the incidence of and mortality due to cervical cancer. However, human papillomavirus (HPV) testing is being increasingly recommended for primary cervical cancer screening. One benefit of HPV testing is the opportunity for self- sampled specimen collection. The purpose of this dissertation was to determine if HPV self- sampling can improve participation in cervical cancer screening in under-screened rural communities. A systematic literature review and mixed methods study design addressed three objectives. A systematic literature review and meta-analysis calculated a pooled estimate of HPV self-sampling uptake in under-screened women (objective 1). Qualitative thematic analysis of community focus groups explored barriers to cervical cancer screening in an under- screened rural population and described women’s initial attitude towards HPV self-sampling (objective 2). These findings supported the design and implementation of a pragmatic randomized HPV self-sampling pilot study that determined the feasibility and acceptability of at- home HPV self-sampling to increase uptake of cervical cancer screening in an under- screened rural community (objective 3). Meta-analysis of the literature found under-screened ii women were 2.1 (95%CI 1.3 – 3.5) times more likely to participate in screening when HPV self- sampling was offered compared to re-call letters for Pap testing. Thematic analysis found logistical, procedural, and knowledge barriers to cervical cancer screening. HPV self-sampling addressed logistical barriers, such as inconvenient clinic hours, and procedural barriers, such as embarrassment and lack of privacy. However, self-sampling does not address knowledge barriers, specifically a women’s fear of cancer or lack of awareness of the benefits of screening. The HPV self-sampling pilot study included 818 eligible women. Women who received a HPV self-sampling kit were RR=3.7 (95%CI 2.2 – 6.4) times more likely to be screened (HPV self-sampling or Pap testing) compared to women with no intervention, and RR=2.1 (95%CI 1.5 – 2.8) times more likely to be screened compared to women who received a Pap test reminder letter. The absolute participation with HPV self-sampling was moderate at 20.9% (95% CI 16.7–25.7%), indicating that barriers to screening remain. Together these results contribute further evidence for the use of HPV self-sampling to increase uptake of cervical cancer screening in under-screened rural women. iii Acknowledgements To my supervisor, Dr. Dionne Gesink, thank you so much for your continuous support in both academic and life pursuits. Your mentorship and encouragement will always be remembered. A sincere thank you to my committee members Dr. Ann Burchell and Dr. Tom Wong for their mentorship, guidance, and thorough review at every stage of this dissertation. Many thanks to Drs. Katherine brain, Shelley Deeks, Aisha Lofters, and Michelle Cotterchio for donating their time in review and thoughtful recommendations to strengthen this dissertation. I would like to acknowledge the funding support provided by the University of Toronto’s Open Graduate Scholarship, the Ontario Graduate Scholarship, and School of Graduate Studies travel awards, and Cancer Care Ontario. Thank you to numerous individuals who contributed to the success of this project: Suzanne Trivers and the entire staff at the Mount Forest Family Health Team and Claire Stewart Medical Clinic, Dr. Anu Rebbapragada and the Ontario Public Health Laboratory, and to the entire Provincial Under-Never Screened Research Team. I have greatly benefited from the contributions and advise from fellow PhD students, with special thanks to Dr. Diana Withrow and Dr. Jessica Dennis. To my parents, and brother, thank you for your continuous love and support, and for nurturing my curiosity and instilling in me that a little education is not hard to carry around. To Glenn, thank you for all that you have helped me achieve, I am forever grateful for your love, support and sacrifice. Rowan, thank you for putting life into perspective everyday. iv Table of Contents ABSTRACT ............................................................................................................................................ ii ACKNOWLEDGEMENTS ....................................................................................................................... iv TABLE OF CONTENTS ............................................................................................................................ v LIST OF TABLES .................................................................................................................................. vii LIST OF FIGURES .................................................................................................................................. ix LIST OF APPENDICES ........................................................................................................................... xi LIST OF ABBREVIATIONS ..................................................................................................................... xii CHAPTER 1: INTRODUCTION AND OBJECTIVES ..................................................................................... 1 1.1 INTRODUCTION ..................................................................................................................................... 1 1.2 STUDY OBJECTIVES ................................................................................................................................. 1 1.3 READERS NOTE ..................................................................................................................................... 2 CHAPTER 2: BACKGROUND AND LITERATURE REVIEW ......................................................................... 3 2.1 EPIDEMIOLOGY AND ETIOLOGY OF CERVICAL CANCER .................................................................................. 3 2.1.1 Human papillomavirus (HPV) ..................................................................................................... 4 2.1.2 Cervical Cancer Development .................................................................................................... 5 2.1.3 Cervical Cancer Progression ....................................................................................................... 6 2.1.4 HPV Prevalence in the Population .............................................................................................. 7 2.1.5 Risk factors for HPV infection anD Cervical Cancer .................................................................. 10 2.1.6 HPV Vaccination ...................................................................................................................... 12 2.2 CERVICAL CANCER SCREENING ............................................................................................................... 15 2.2.1 Papanicolaou (Pap) Testing ..................................................................................................... 15 2.2.2 HPV Testing .............................................................................................................................. 16 2.2.3 HPV Testing for Cervical Cancer Screening .............................................................................. 18 2.2.4 Cost-effectiveness of HPV testing ............................................................................................ 18 2.2.5 Screening GuiDelines anD ProposeD Algorithms ...................................................................... 19 2.2.6 Implementing HPV Testing: ..................................................................................................... 20 2.2.7 Participation in Cervical Cancer Screening ............................................................................... 23 2.2.8 Barriers to Cervical Cancer Screening ...................................................................................... 25 2.2.9 HPV Self-Sampled Testing ........................................................................................................ 25 2.3 SUMMARY: ......................................................................................................................................... 26 CHAPTER 3: METHODS ....................................................................................................................... 28 3.1 CONCEPTUAL MODEL ........................................................................................................................... 28 3.2 SUMMARY OF STUDY DESIGN ................................................................................................................ 29 3.3 OBJECTIVE 1: SYSTEMATIC REVIEW AND META-ANALYSIS ........................................................................... 32 3.3.1 StuDy Design: ..........................................................................................................................