Causes of Delayed Presentation Among Patients With Advanced Ocular Surface Squamous Neoplasia Presenting at Kenyatta National Hospital

Abstract

Background: Ocular surface squamous neoplasia (OSSN) encompasses a spectrum of disease involving abnormal growth of squamous epithelial cells on the surface of the eye. In Africa and in Sub Saharan Africa (SSA) specifically, the incidence of OSSN is the highest in the world at 3.0-3.5 cases/year/100 000 population. Delayed health seeking in cancer patients has been linked to late-stage presentation. Delay in most cases leads to limited and often ineffective treatment options. Understanding the reasons behind delay in initial presentation and delays between subsequent hospital visits for diagnosis and treatment of OSSN would result in a better appreciation of why patients make the decisions they make regarding their care. Objective: To explore the factors contributing to delayed presentation among patients with advanced OSSN at Kenyatta National Hospital. Methods: A qualitative study using the phenomenological approach was undertaken interviewing all newly diagnosed patients with advanced OSSN in Kenyatta National Hospital during the months of March to May 2023 to a data saturation point. An alternative OSSN clinical classification criterion was employed to facilitate the case definition pre surgical intervention. Interview data underwent content and thematic analysis and a thematic map of possible causes of delay developed. Results: Five major themes and nine sub themes were found to influence delay in presentation among OSSN patients. The major themes were, Triggers to Action, HIV comorbidity, Cost of care and Fatalism and beliefs. The sub themes identified were pain and reduced vision, perceived severity, HIV related morbidity and CCC follow-up, Actual, perceived and opportunity cost of care and lastly fatalistic religious and cultural beliefs. Conclusion: OSSN was found to commonly present as a painless eye swelling leading to low patient awareness of perceived severity of the swelling contributing to delay in seeking care. While actual initial cost of care wasn’t found to be a barrier to initial presentation, the opportunity cost of care contributes to delay in healthcare seeking when more health visits are needed. HIV co-morbidity directly contributes to delay in these patients while fatalistic attitudes and patient beliefs interact indirectly with other factors in the thematic map to contribute to delay. Reduced awareness among healthcare workers in CCC may be further contributing to delay