TABLE OF CONTENTS
DECLARATION……………………………………………………………………………………………….. ii
ACKNOWLEDGEMENT………………………………………………………………………………. iv
TABLE OF CONTENTS…………………………………………………………………………………. v
LIST OF TABLES…………………………………………………………………………………………… viii
LIST OF FIGURES…………………………………………………………………………………………… ix
ABBREVIATIONS AND ACRONYMS……………………………………………………………… x
DEFINITION OF OPERATIONAL TERMS…………………………………………………….. xi
ABSTRACT…………………………………………………………………………………………………….. xii
CHAPTER ONE: INTRODUCTION………………………………………………………………….. 1
CHAPTER TWO: LITERATURE REVIEW……………………………………………………… 7
CHAPTER THREE: METHODS AND MATERIALS……………………………………… 17
CHAPTER FOUR: RESULTS………………………………………………………………………….. 24
CHAPTER FIVE: DISCUSSION, CONCLUSIONS AND
RECOMMENDATIONS…………………………………………………………………………………… 43
REFERENCES………………………………………………………………………………………………… 54
APPENDICES………………………………………………………………………………………………….. 58
Appendix I: Map of Study Area- Kenya, Kisumu and Kakamega………………………….. 59
Appendix II: Questionnaire-English version……………………………………………………….. 60
Appendix III: Questionnaire- Kiswahili version…………………………………………………… 63
Appendix IV: Informed Consent –English version………………………………………………. 78
Appendix V: Informed Consent- Kiswahili version……………………………………………… 78
Appendix VI: Ethical Approval……………………………………………………………………… 80
Appendix VII: NACOSTI Permit……………………………………………………………………. 81
LIST OF TABLES
Table 3.1: Population of the Study………………………………………………………………………… 18
Table 3.2: Sample Size…………………………………………………………………………………………. 19
Table 4.1: Respondents Socio-Demographic Characteristics……………………………………… 26
Table 4.2: Respondents Psychosocial Characteristics……………………………………………….. 27
Table 4.3: Respondents Cultural and Behavioral Characteristics……………………………….. 29
Table 4.4: Health System Characteristics Influencing delay in seeking care………………… 30
Table 4.5: Respondents Histological Type………………………………………………………………. 31
Table 4.6: Respondents FIGO Stage at Diagnosis…………………………………………………… 32
Table 4.7:Association of Sociodemographic Characteristics and Delay in Seeking Care 34
Table 4.8: Association of Psychosocial Factors and delay in Seeking Medical Care…….. 36
Table 4.9: Association of Cultural Practices and delay in Seeking Medical Care…………. 38
Table 4.10:Association of Health System Factors and Delay in Seeking Medical Care 39
Table 4.11: Model Summary…………………………………………………………………………………. 40
Table 4.12: Variables in the Equation…………………………………………………………………….. 42
LIST OF FIGURES
Figure 1.2: Conceptual framework of delay in seeking care…………………………………… 7
Figure 4.1: Flow chart of enrollment, exclusion and analysis………………………………… 24
Figure 4.2: Respondents Consultation with Obstetrician……………………………………… 31
ABBREVIATIONS AND ACRONYMS
AIDS: Acquired Immune Deficiency Syndrome
ASCO: American Cancer Society
FIGO: The International Federation of Gynecology and Obstetrics
GLOBOCAN: Global Burden of Cancer.
HBM: Health Belief Model
HIV: Human Immunodeficiency Virus
HPV: Human Papilloma Virus
IEC: Information, Education and Communication materials JOOTRH: Jaramogi Oginga Odinga Teaching and Referral Hospital KCRH: Kakamega County Referral Hospital
KNBS: Kenya National Bureau of Statistics
KNH: Kenyatta National Hospital
NHIF: National Hospital Insurance Fund SPSS: Statistical Packages for Social Sciences SSA: Sub Saharan Africa
TB: Tuberculosis
VIA: Visual Inspection with Acetic Acid VILI: Visual Inspection with Lugol’s odine WHO: World Health Organization
DEFINITION OF OPERATIONAL TERMS
Cryotherapy: freezing of abnormal lesions with a probe cooled by liquid nitrous oxide or carbon dioxide in order to destroy them (Bashir et al, 2012).
Metaplasia: is a structural change from one type of epithelium to another.
Pap smear: the papanicolou smear is a screening method used to detect precancerous and cancerous cervical lesions. It involves use of a light brush applied to the cervix to obtain cytological sample for microscopic analysis.
Symptoms: any patient’s complaints that led to a diagnosis of cervical cancer which include low back pain, foul smelling vaginal discharge and irregular vaginal bleeding among others.
Psychosocial: relating to the interrelation of social factors and individual thought and behavior. The combined influence that psychological factors and the surrounding social environment have on an individual’s physical and mental wellness and their ability to function.
Cultural: A way of life, especially relating to the habits, beliefs, and traditions of a certain people.
Healthcare systems: A collection of all organizations, people and actions whose primary intent is to promote, restore or maintain health for a given population.
Patient delay: is the time period of three months or more between patients first being aware of their symptoms and their first contact with a medical practitioner (Pack & Gallo, 1938; Pakseresht, 2014).
Health system delay: defined as one month or more from the time of first patient visit to the physician and the beginning of treatment (Pack & Gallo, 1938).
ABSTRACT
Cervical cancer is a disease with tremendous public health significance. It is the leading cause of cancer morbidity and mortality among women in Kenya. Although curable through regular screening and treatment of precancerous lesions, its incidence is on the rise in Eastern Africa and many women are presenting with advanced disease leading to low survival rates. In Western Kenya, it is the most common type of cancer affecting women. Patient delay accounts for a large proportion of those who present with advanced disease in developing countries. Reducing the time from onset of first symptoms to diagnosis will effectively improve quality of life and prognosis of cervical cancer patients. This cross-sectional study was conducted to explore the process of symptom appraisal and determine socioeconomic, psychosocial, and cultural and health system factors that contribute to patient delay in seeking medical care for cervical cancer among women in two county referral hospitals in rural Kenya. In the setting where the study was carried out, the prevalence of HIV/AIDS is relatively high. There were 274 respondents who participated in the study. Face to face interviews using a pretested structured questionnaire and medical records review were carried out. Data was collected from all those who met the inclusion criteria and had given their informed consent with the option of voluntary withdrawal from the study at any stage. Descriptive and inferential statistics were analyzed using Statistical Packages for Social Sciences version 21 (SPSS Inc, USA). Chi square test and logistic regression was used to derive relationships between variables; results were considered significant with p value
≤0.05. Outcome measures were a description of determinants of late presentation and diagnosis of cervical cancer. The findings indicate that 55% of patients waited more than three months before seeking medical care mainly because they did not appraise the symptoms as serious warranting medical attention. This was despite majority (85%) of them having good access to medical facilities. Psychosocial factors such as beliefs and perceptions held by the patients about initial symptoms and availability of social support networks were the most significant predictors of delay in seeking medical care. Age of patient, education level, employment status, access to insurance, beliefs about traditional medicine, knowledge of cervical cancer and preventative health orientation of the respondents also contributed to delay in seeking care. In conclusion, there is need to raise awareness about cancer to empower both the public and health workers to recognize its signs and symptoms early and seek treatment. There is a need for the patients to be economically empowered in order to access available cancer care. They could be encouraged to enroll in the National Health Insurance Fund in order to benefit from its various cancer treatment packages.
CHAPTER ONE: INTRODUCTION
Background information
Cervical cancer is a curable disease if diagnosed early. However, research by different scholars (Chadza et al., 2012; Ndikom and Ofi, 2012) has established that many women seek treatment when the disease has reached an inoperable stage. Hospital management of cervical cancer patients in most developing countries remains a challenge as over 80% of women are diagnosed at advanced stages of the disease when effective treatment is no longer possible (Chadza et al., 2012). This has contributed to the high mortality rates due to cervical cancer in developing countries. Cervical cancer is the third most commonly diagnosed cancer in women worldwide with more than 85% burden in developing countries (Jemal et al., 2011). While the incidence of cervical cancer is on the decline in more developed countries, it is on the rise particularly in Africa.
Eastern Africa has the highest incidence (42.7/100,000) as well as the highest mortality rates from cervical cancer worldwide (Ferlay et al., 2012). Currently, cervical cancer is the commonest cause of cancer deaths among women in Kenya (Bashir et al., 2012) and this is attributed to the fact that most patients present late (Gichangi et al., 2003). Despite lack of a National Cancer Registry, data at the Eldoret Cancer Registry, a population- based cancer registry for Western Kenya shows that cervical cancer is also the most common cancer among women in the region (Tenge et al, 2009). In cancer care, prognosis is strongly associated with the stage of the disease at presentation. Therefore, barriers to access to care may delay diagnosis and/or treatment resulting in advanced disease at the time of presentation (Kimlin, 2010) when only palliative care is possible. Therefore efforts to promote early detection continue to be the focus of fighting cervical
cancer. The goal of early detection is to diagnose and treat cervical cancer patients in an early stage when the prognosis for long-term survival is best (Gyenwali et al., 2013). Studies (Jemal et al., 2011; Gyenwali et al., 2013) have shown that women diagnosed with early or local (stage 1) cervical cancer have a 98% chance of surviving 5 years after diagnosis. However, the five year survival is decreased to 17% with distant cancer at diagnosis (ASCO, 2009).
Patient pathways to presentation and initial management are key determinants of cancer patient outcomes. Delays in seeking medical care are influenced by patient characteristics and health system factors among other factors. Patient delay refers to the time from onset of symptoms to the first medical consultation (as the time gap of more than 3 months (Pakseresht, 2014). Delays by patients could be due to differences in socio-demographic and cultural factors, a strong belief in traditional medicine, negative perceptions of the disease, poverty, poor education and denial (Pakseresht, 2014). Health system factors that contribute to delay are complex and are influenced mostly by doctor and institutional factors, such as delays in scheduling appointments, misdiagnoses, lack of enough trained personnel to adequately diagnose and treat patients and poor referral systems (Chadza et al., 2012). To ensure optimal care and survivorship outcomes, it is important to understand and address these diagnostic and therapeutic issues. This study was therefore done to determine factors responsible for late presentation and diagnosis in Western Kenya.
Problem statement
The global distribution and rising prevalence of cancer shows a worrisome ‘cancer divide’ where survival rates are low and outcomes poor among socioeconomically
disadvantaged populations due to weak health systems and failure to start treatment early (Coleman, 2014; Randall and Ghebre, 2016). In particular, data at the Nairobi Cancer Registry shows that of the 2,354 women diagnosed with cervical cancer, 65% died (Phillips-Howard et al, 2014). While the incidence of cervical cancer is on the decline in developed countries, the incidence of cervical cancer in Kenya is on the rise (Ferlay et al, 2012). This coupled with low survival rates due to factors such as advanced disease at presentation pose a great challenge to the control of cervical cancer. Yet, only a small proportion of global resources for cancer are spent in countries of low and middle income (Farmer et al., 2010). While it has been noted that patient delay accounts for a large proportion of those who present with advanced disease in Kenya (Otieno et al, 2010), we do not understand why women delay in seeking medical care after experiencing the signs and symptoms of cervical cancer. There is limited information on factors that contribute delay in seeking medical care among women with invasive cervical cancer patients particularly in Western Kenya which this study sought to investigate and document.
Justification
Cancer disproportionately affects the low and middle-income countries (Coleman, 2014) and the rural poor are more vulnerable to having worse patient outcomes (Kimlin, 2010). In Sub-Saharan Africa (SSA), about 60%–75% of women who develop cervical cancer live in rural areas (Ngutu and Nyamongo, 2015). Majority of poor people in Kenya live in the rural areas such as Western Kenya where the poverty levels are higher (KNBS, 2015). Although county-specific cancer rates are unavailable in Kenya, national referral hospital records suggest a high proportion of cervical cancer patients are from Western Kenya (PATH, 2004). Kisumu and Kakamega were specifically chosen because they
have functional level five hospitals with a high patient workload and significant referrals from within the region. If the current prevention and diagnostic strategies remain unchanged, cervical cancer cases are predicted to increase to over 130,000 cases annually by 2025 (Adewole, 2013). Cervical cancer incidence peaks at the most productive age between 33-55 years. This will impact negatively on the achievement of Sustainable Development Goals on poverty, education and gender equality. Delay in presentation of cancer patients has significant economic impact than treating patients with early-stage disease (Yau et al., 2010).
Research questions
- What socio- demographic factors contribute to delay in seeking medical treatment among invasive cervical cancer patients at Jaramogi Oginga Odinga Teaching and Referral and Kakamega County Referral Hospitals?
- What psychosocial factors contribute to delay in seeking medical care among invasive cervical cancer patients at Jaramogi Oginga Odinga Teaching and Referral and Kakamega County Referral Hospitals?
- What cultural and behavioral factors contribute to delay in seeking medical care among invasive cervical cancer patients at Jaramogi Oginga Odinga Teaching and Referral and Kakamega County Referral Hospitals.
- What healthcare system characteristics contribute to delay in seeking medical care?
Null Hypotheses
- There is no association between socio-demographic characteristics and delay in seeking medical treatment among invasive cervical cancer patients at Jaramogi Oginga Odinga Teaching and Referral and Kakamega County Referral Hospitals.
- There is no association between psychosocial factors and delay in seeking medical care among invasive cervical cancer patients in this setting at Jaramogi Oginga Odinga Teaching and Referral and Kakamega County Referral Hospitals.
- There is no relationship between cultural and behavioral factors and delay in seeking medical care among cervical cancer patients at Jaramogi Oginga Odinga Teaching and Referral and Kakamega County Referral Hospitals.
Objectives
- General objective: To determine factors that contribute to delay in seeking medical care and diagnosis among women with invasive cervical cancer at Jaramogi Oginga Odinga Teaching and Referral and Kakamega Provincial General Hospitals.
Specific objectives
- To determine the socio- demographic characteristics that contribute to delay in seeking medical care among invasive cervical cancer patients at Jaramogi Oginga Odinga Teaching and Referral and Kakamega County Referral Hospitals.
- To determine the psychosocial factors influencing women’s ability to seek medical care among invasive cervical cancer patients at Jaramogi Oginga Odinga Teaching and Referral and Kakamega County Referral Hospitals.
