Surviving Childhood Cancer in Western Kenya

We present the rationale and objectives of this thesis in Chapter One. The findings described in this thesis derive from data collected from patients treated and healthcare providers working at Moi Teaching and Referral Hospital (MTRH) in Eldoret, Western Kenya. Post-treatment follow-up attendance in Sub-Saharan Africa is generally low, complicating the protocolized evaluation of survivors. To identify context-specific drivers of morbidity and to evaluate the feasibility of different models of follow-up care, exploring the experiences and symptom burden of childhood cancer survivors in Kenya is much needed. Additionally, discrimination and stereotyping of childhood cancer may have long-lasting consequences for survivors and their caregivers who attempt to resume their education, careers, and community participation. We performed a mixed-methods study, described in Chapter Two. Children below 19 years, managed for a brain tumor at the neurosurgery or the pediatric oncology departments between 2015 and 2022 were included. We found a two-year event-free survival rate of thirteen percent and treatment failures were characterized by particularly high abandonment rates. A lack of staffing, time, and resources affected multidisciplinary management and should be structurally addressed at a national or county governmental level. Chapter Three maps literature regarding the physical and psychosocial late effects of childhood cancer survivors. Most studies had a retrospective study design, two to five years follow-up, solely chemotherapy as a treatment modality, and Egypt as the country of origin. The psychosocial domain lacked attention compared to the physical domain. Chapter Four presents a study on self-reported late effects in childhood cancer survivors in Kenya and Chapter Five explores parental reports on late effects of childhood cancer survivors and their follow-up preferences. More than 70% of survivors and caregivers reported health conditions. Information about the long-term effects of cancer and its treatment was lacking and the follow-up duration was longer among informed young adult survivors. In Chapter Six we describe a case report of a Kenyan Hodgkin lymphoma survivor who faced chemotherapy-induced late effects (chronic heart dysfunction), together with stigmatization from the community. We further illustrate the social reintegration and stigmatization of Kenyan childhood cancer survivors in Chapter Seven and Eight. Families' income (93%) decreased since the start of treatment. Survivors and families were discriminated against because the child was perceived fragile, and cancer was considered fatal, contagious, or caused by witchcraft or a curse. Increased cancer stigma was associated with patient characteristics (male sex, solid tumor, daily life limitations, a short time since treatment completion, adverse reactions upon cancer disclosure, negative perception of marital prospects). Chapter Nine details the study protocol of a non-randomized prospective cohort study that will be performed at Moi Teaching and Referral Hospital in Western Kenya. The primary study outcome will be the survivors’ follow-up adherence. Additionally, healthcare providers will be trained on follow-up care; whereafter, a form will be introduced at the outpatient clinic to document late effects in pediatric survivors attending the clinic for the period of a year. We reflect on the thesis findings in Chapter Ten. Survivorship care and research in Kenya could benefit from establishing dedicated survivor clinics that offer multidisciplinary expertise, while also delegating responsibilities from tertiary treatment centers to lower-tier facilities. Non-governmental organizations could further be integrated in follow-up care to improve access to services and funding. Global initiatives that develop resource-stratified survivorship guidelines should ensure an equitable representation of global healthcare professionals in their review panels. The focus on explorative research should gradually shift to interventional and implementation efforts to expand its reach and impact on follow-up care in Sub-Saharan Africa.