Level of non-utilisation and barriers to initiation of hydroxyurea among children with sickle cell disease attending Mulago Sickle Cell Cinic, Kampala, Uganda

Abstract

Background: Sickle cell disease (SCD) is an inherited blood disorder characterized by anemia, severe pain, and other vaso-occlusive complications with over 300,000 individuals born each year with the disorder in sub-Saharan Africa. Hydroxyurea (HU) could improve the health-related quality of life of these persons, however, challenges to adoption and adherence persist. There are limited studies on the level of non utilization and barriers to initiation of HU in Uganda. This study aimed to determine the proportion of children with sickle cell anemia (SCA) not utilizing HU and to describe the barriers to initiation of HU among children with SCA attending Mulago hospital sickle cell clinic, Uganda Methods: A sequentially explanatory mixed methods study was conducted among 356 children aged 9 months to 17 years. data was collected using interviewer administered questionnaires and in-depth interviews with the care takers of the children. Quantitative data analysis included determining prevalence of HU non utilization using frequencies and percentages and logistic regression analysis to determine the factors associated with HU non utilization. Thematic analysis approach with the help of Atlas ti 9 was used to analyze qualitative data. Results: A total of 356 child-adult (caretaker) pairs were recruited. The average age of the children recruited in the study was 8.35 years (SD 4.79, IQR=7, skewness +0.967). The proportion of not utilizing HU was established to be 79/356 (22.2%) and was significantly associated with child‘s age (AOR=4.46, P<0.001), household monthly income (AOR=2.398 P=0.012) and previous hospitalization history (AOR=1.97, P=0.006). the major barriers to HU initiation were frequent stockouts, hydroxyurea not being readily available at local pharmacies, perceived lack of benefits of hydroxyurea, poor support from the children‘s fathers, use of herbal medication and lack of well written displayed guidelines. Conclusion and recommendations: The level of non-utilization of HU among children with SCA attending Mulago Hospital Sickle Cell Clinic, Uganda is high at 22.2% with frequent stockouts of hydroxyurea from the sickle cell clinic, HU not being readily available at local pharmacies, additional pill burden and denial of parents, perceived lack of benefits of hydroxyurea, poor support from the children‘s fathers, use of herbal medication and lack of well written displayed guidelines were the barriers identified. There is an urgent need for programmers and policymakers to ensure continuous availability of HU at the sickle cell clinics, continuous and timely training, and display of SOPs. Keywords: hydroxyurea, sickle cell disease, non-utilization, barriers, sickle cell anemia.