Factors associated with delays in seeking treatment for acute bleeding among persons living with haemophilia in Uganda: a cross-sectional mixed methods study

Abstract

Abstract Introduction Haemophilia is associated with a high tendency of acute bleeding episodes which can lead to severe morbidity and mortality in the absence of prompt care. Although delay in seeking care can lead to adverse outcomes, many people with haemophilia (PwH) in Uganda do not report to haemophilia treatment centres (HTCs) for treatment in the event of acute bleeding within the two hours recommended by the World Federation of Hemophilia (WFH). Information on factors associated with delays in seeking care is limited. A study among people with haemophilia presenting at five regional treatment centres across Uganda found transport costs is a major issue impacting treatment seeking for acute bleeds Aims This study aims to determine the extent and factors associated with delays in seeking treatment for acute bleeding among people with haemophilia (PwH) in Uganda to inform appropriate mitigating stratregies and hence improve health outcomes and quality and life. Methods The study was conducted in five haemophilia treatment centres (HTCs) across Uganda and used a cross-sectional design with mixed methods of data collection. PwH seeking care at the HTCs for acute bleeding episodes were consecutively sampled. A pre-tested questionnaire was used to collect data. Alongside this, qualitative interviews explored health workers’ perceptions of factors associated with delays in seeking treatment among patients. Health workers were purposively selected. The quantitative data were analysed using STATA version 16; qualitative data were analysed manually using inductive thematic analysis to generate codes, categories, sub-themes and themes. Multivariate modified Poisson regression analysis was used to determine factors associated with delay to seeking treatment at HTCs. Results 224 male PwH, aged 1 to 67 years (median 11 years) were included in the analysis. The time taken following an acute bleeding symptom to attending the HTC ranged between 1 and 65 hours, with a median of 9 hours. PwH were more likely to delay seeking treatment for acute bleeding episodes if they used public means of transport to the HTC (aPR 1.39; 95% CI 1.22-1.59). PwH who took immediate other actions on recognition of a sign of an acute bleeding episode were less likely to delay seeking treatment at the HTC (aPR 0.75; 95% CI 0.66-0.84). Conclusion Delays in seeking treatment among PwH in Uganda are the result of an interplay between individual and health system factors. Continued information and education programmes are needed to ensure PwH and caregivers understand the benefits of early treatment-seeking, alongside expanding HCP knowledge and capacity building. Mobile clinics and home therapy could reduce travel and waiting times for those needing to access treatment. Addressing these issues could help to provide a level of care for PwH that helps to ensure improved quality of life and better health outcomes.