Female Breast Cancer Late Presentation in Saudi Arabia

286 Pages·2015·3.41 MB·English

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.
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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.
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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
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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.
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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
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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.
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Table of Contents
List of Tables............................................................................................................ XII
List of Figures ......................................................................................................... XIV
List of Abbreviations................................................................................................ XV
Chapter 1: Introduction ................................................................................................ 1
1.1 Cancer in the Gulf Countries.............................................................................. 1
1.2 Breast cancer in Saudi Arabia ............................................................................ 2
1.3 Concerns about late-stage diagnosis of breast cancer in Saudi Arabia .............. 8
1.4 Late-presentation breast cancer and survival ................................................... 10
1.5 The concept of late presentation ...................................................................... 14
1.5.1 Delay avoidance ........................................................................................ 15
1.5.2 Time delay ................................................................................................. 16
1.5.3 Sources and phases of delay ...................................................................... 16
1.5.4 Tumour stages ........................................................................................... 17
1.5.5 Late presentation: definitions used in this thesis ...................................... 17
1.6 Aim and objectives of the thesis ...................................................................... 19
1.6.1 Aim of the thesis ....................................................................................... 19
1.6.2 Objectives .................................................................................................. 20
1.7 Thesis structure ................................................................................................ 20
1.8 Summary .......................................................................................................... 21
Chapter 2: The study setting—The Kingdom of Saudi Arabia .................................. 22
2.1 Introduction ...................................................................................................... 22
2.2 Overview of Saudi Arabia ................................................................................ 22
2.2.1 Population demography ............................................................................ 23
2.2.2 Distribution of administrative regions in Saudi Arabia ............................ 23
2.2.3 Cultural aspects ......................................................................................... 24
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2.3 Healthcare in Saudi Arabia .............................................................................. 29
2.3.1 The organization of healthcare services in Saudi Arabia .......................... 29
2.3.2 Healthcare in Saudi Arabia: strengths and challenges .............................. 30
2.3.3 Options for seeking medical care for breast cancer symptoms ................. 32
2.3.4 Breast cancer care ..................................................................................... 33
2.4 Summary .......................................................................................................... 36
Chapter 3: Methodology ............................................................................................ 37
3.1 Introduction ...................................................................................................... 37
3.2 Thesis design .................................................................................................... 37
3.3 Rationale .......................................................................................................... 39
3.4 The implementation of the mixed methods approach ...................................... 41
3.4.1 Development of the study design for the thesis ........................................ 42
3.4.2 Phase I ....................................................................................................... 46
3.4.3 Phase II ...................................................................................................... 46
3.4.4 Phase III .................................................................................................... 47
3.4.5 Phase IV .................................................................................................... 47
3.5 Summary .......................................................................................................... 52
Chapter 4 Phase I: Late presentation female breast cancer in the Middle East—a
systematic review ....................................................................................................... 53
4.1 Introduction ...................................................................................................... 53
4.2 The aim of the review ...................................................................................... 54
4.3 Methods ............................................................................................................ 54
4.3.1 Studies selection ........................................................................................ 54
4.3.2 The search strategy .................................................................................... 55
4.3.3 The output of the search strategy .............................................................. 57
4.3.4 Quality assessment .................................................................................... 58
4.4 Data analysis .................................................................................................... 64