Abstract
BackgroundIn the low- and middle-income countries, most patients with esophageal cancer present with advanced stage disease and experience poor survival. There is inadequate understanding of the factors that influence decisions to and actual health-seeking, and adherence to treatment regimens among esophageal cancer patients in Uganda, yet this knowledge is critical in informing interventions to promote prompt health-seeking, diagnosis at early stage and access to appropriate cancer therapy to improve survival. We explored health-seeking experiences and adherence to treatment among esophageal cancer patients attending the Uganda Cancer Institute.MethodsWe conducted an interview based qualitative study at the Uganda Cancer Institute (UCI). Participants included patients with established histology diagnosis of esophageal cancer and healthcare professionals involved in the care of these patients. We used purposive sampling approach to select study participants. In-depth and key informant interviews were used in data collection. Data collection was conducted till point of data saturation was reached. Thematic content analysis approach was used in data analyses and interpretations. Themes and subthemes were identified deductively.ResultsSixteen patients and 17 healthcare professionals were included in the study. Delayed health-seeking and poor adherence to treatment were related to (i) emotional and psychosocial factors including stress of cancer diagnosis, stigma related to esophageal cancer symptoms, and fear of loss of jobs and livelihood, (ii) limited knowledge and recognition of esophageal cancer symptoms by both patients and primary healthcare professionals, and (iii) limited access to specialized cancer care, mainly because of long distance to the facility and associated high transport cost. Patients were generally enthused with patient – provider relationships at the UCI. While inadequate communication and some degree of incivility were reported, majority of patients thought the healthcare professionals were empathetic and supportive.ConclusionHealth system and individual patient factors influence health-seeking for symptoms of esophageal cancer and adherence to treatment schedule for the disease. Interventions to improve access to and acceptability of esophageal cancer services, as well as increase public awareness of esophageal cancer risk factors and symptoms could lead to earlier diagnosis and potentially better survival from the disease in Uganda.
Highlights
In the low- and middle-income countries, most patients with esophageal cancer present with advanced stage disease and experience poor survival
Health system and individual patient factors influence health-seeking for symptoms of esophageal cancer and adherence to treatment schedule for the disease
This study aimed to explore factors influencing esophageal cancer patients’ health-seeking behavior and adherence to treatment at the Uganda Cancer Institute (UCI), Kampala
Summary
In the low- and middle-income countries, most patients with esophageal cancer present with advanced stage disease and experience poor survival. There is inadequate understanding of the factors that influence decisions to and actual health-seeking, and adherence to treatment regimens among esophageal cancer patients in Uganda, yet this knowledge is critical in informing interventions to promote prompt health-seeking, diagnosis at early stage and access to appropriate cancer therapy to improve survival. Esophageal cancer ranked seventh in incidence with an estimated 572,000 new cases and sixth in mortality overall with 509,000 deaths in 2018 worldwide. Data from the Kampala Cancer Registry (KCR) show that between 1991 and 2010, the incidence of esophageal cancer in both male and female was increasing by about 1.6 to 3.3% per annum [4]. The esophageal cancer risk ratio in Uganda and most of Africa (male: female) is about 2:1 [5, 6]
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