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Female Breast Cancer Late Presentation in Saudi Arabia: a Mixed Methods Study

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Female Breast Cancer Late Presentation in Saudi Arabia: a Mixed Methods Study Female Breast Cancer Late Presentation in Saudi Arabia: A Mixed Methods Study Sultana Abdulaziz A Alhurishi Submitted in accordance with the requirements for the degree of Doctor of Philosophy The University of Leeds School of Medicine July 2014 The candidate confirms that the work submitted is his own and that appropriate credit has been given where reference has been made to the work of others. This copy has been supplied on the understanding that it is copyright material and that no quotation from the thesis may be published without proper acknowledgement © 2014 The University of Leeds and Sultana Abdulaziz A Alhurishi The right of Sultana Abdulaziz A Alhurishi to be identified as Author of this work has been asserted by him in accordance with the Copyright, Designs and Patents Act 1988. The candidate confirms that the work submitted is his/her own, except where work which has formed part of jointly authored publications has been included. The contribution of the candidate and the other authors to this work has been explicitly indicated below. The candidate confirms that appropriate credit has been given within the thesis where reference has been made to the work of others. Chapter 4 of the thesis is an updated version of the published review appeared in publication as follows: Factors influencing late presentation for breast cancer in the Middle East: a systematic review. Asian Pac J Cancer Prev. 12(6), pp.1597-1600. 2011. Alhurishi, S., Lim, J.N.W., Potrata, B. and West, R. I was responsible for the work in term of literature searching, data analysis and writing. The contribution of the other authors was advisory. Lim, J.N.W. Supervised the review including data analysis and contributed to the preparation of the manuscript. This copy has been supplied on the understanding that it is copyright material and that no quotation from the thesis may be published without proper acknowledgement © 2014 The University of Leeds and Sultana Abdulaziz A Alhurishi The right of Sultana Abdulaziz A Alhurishi to be identified as Author of this work has been asserted by him in accordance with the Copyright, Designs and Patents Act 1988. - I - Dedication This thesis is lovingly dedicated to my parents, Abdulaziz and Haya, who inspired me with their passion in seeking knowledge. Their encouragement, words, and endless love have supported me through my PhD studies and my life. I also dedicate this work to my sons, Rashed and Mohammed. Seeking knowledge has many forms, and a research postgraduate study is one of them. I am sure that it was not always easy for you to watch your mother as she worked on this thesis, but maybe this is all you need to know: no thesis could ever take the place in my heart that you two hold. Working hard and seeking knowledge, these are also ways of honouring loved ones. - II - Acknowledgements My highest thanks go to Allah, who in every way was a support for me on the path leading to the Doctor of Philosophy (PhD) at the University of Leeds. I am indebted to many people who helped me realize this thesis. It is not my intention to fail to mention anyone who was involved in my journey, but you are too many, so to all of you, whose names are not listed here, know that I am grateful for everything you have done for me. I would like to begin by thanking the team of supervisors, Dr Jennifer Lim, Professor Robert West and Dr Barbara Potrata who guided me along on the academic path and are the reason I am able to publish this thesis today. They willingly, at all times, shared their research experiences by providing guidance and support. Their discussion, advice, and comments were always a source of motivation. Their feedback and encouragement improved my research skills. I especially acknowledge their teamwork and professional manner in dealing with the challenges I faced throughout the PhD work. I must acknowledge and admire my husband, Suliman Alhussin. Words are insufficient to express my gratitude and appreciation for his unforgettable care, and the invaluable and extensive support and understanding during the PhD journey. His support, his constant presence at my side throughout my PhD studies in the UK, together with his advice, patience and sense of humour, contributed to the production of this work in a way that can never be repaid. My sons, Rashed and Mohammed, who inspired me with their smiles, their words, their play, and their emotions – thank you so much. I would like to acknowledge the Saudi National Cancer Registry for their tremendous work in registering cancer-related data throughout the Kingdom, and for approving the data release. I especially acknowledge Mrs Haya Al-Eid, who kindly facilitated the process of data collection and answered my research enquiries. The qualitative study would not have been feasible without the participation of the women who had been diagnosed with breast cancer – many, many thanks to them, and may Allah alleviate their pain and restore their health. Moreover, many thanks to Dr Taher Twegieri, Ms Jenan Aldehan, Miss Munera AlMutairi, Mrs Bothyna Faraj, and the rest of the oncology team at the King Faisal Specialist Hospital and Research - III - Centre, who provided unlimited support during data collection for the qualitative study. I would like to thank Dr Raja AlGamdi for her time and linguistic advice in translating the information sheet and the consent form from English to Arabic in the qualitative study. I am also indebted to Dr Suad Almanji, who produced the geographic maps. My endless appreciation for friendship and support goes to Anna Tatton, Cheryl Creggs, Joyce Crocker and Saja Al-Rayes, and all the other PhD students at the Leeds Institute of Health Sciences. I express my deepest gratitude to my parents, Abdulaziz and Haya. This thesis is a product of your guidance and generous support. I can never thank you enough. There were, along the way, some difficult moments that required someone who is knowledgeable in health research and who could understand my feelings as a mother and an international student. To my sister, Dr Haila who was always available to walk beside me in these moments and who always provided unlimited support, may Allah reward you with the highest. My brothers, sisters, and friends – your prayers, motivation and support helped me produce this thesis – many thanks. This PhD was part of a scholarship funded by my employer, King Saud University in Saudi Arabia. This funding source is greatly acknowledged. - IV - Abstract Breast cancer is one of the most common cancers in the developed world, and it is rapidly increasing in developing countries, such as Saudi Arabia. Early stage diagnosis of breast cancer is an aim that would enable better outcomes, especially survival. The impact of early presentation of breast cancer on prognosis is so profound that the investigation into factors influencing late presentation of female breast cancer in Saudi Arabia is vital to attain timely diagnoses. A mixed methods research design was used to gain insight into the factors associated with late presentation and the reasons for their association; quantitative and qualitative data were collection, analysed, and integrated from various data sets and perspectives. Phase I of this thesis comprised a review of Middle East studies in the published literature about factors associated with late-presentation breast cancer. The review confirmed the need to conduct this research and the originality of such research. Phase II comprised collection of breast cancer-related data from the Saudi National Cancer Registry. In total, 10,663 records for female breast cancer were analysed to investigate the relationship between stage at diagnosis and five independent variables: age, year of diagnosis, nationality, place of residence, and marital status. Analysis found all variables except marital status to be significant. The quantitative findings were used for sampling participants in Phase III, which comprised semi-structured interviews with 19 women diagnosed with breast cancer at early and late stages. The analysis found an interaction between factors associated with late presentation, in particular with age. Furthermore, the results provided insight into contextual factors influencing time to seek medical care and diagnosis following symptom recognition. Phase IV comprised a reanalysis of quantitative data to investigate the interaction between variables and stage at diagnosis, which was prompted by the qualitative findings. The analysis illustrated the characteristics of women who typically receive a late-stage diagnosis. These include living in regions with less oncology care and age older than 58 years or younger than 42 years. In further analysis, inference was then generated by integrating findings: explaining the factors found in the - V - quantitative results through integration with the qualitative findings and then comparing these results with findings in the literature. This thesis presents an innovative platform for investigating a complex health problem and offers answers to what factors might associate with late presentation of female breast cancer in Saudi Arabia and why. - VI - Table of Contents List of Tables............................................................................................................ XII List of Figures ......................................................................................................... XIV List of Abbreviations................................................................................................ XV Chapter
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