Retention-in-care and associated factors among adolescents living with sickle-cell disease in Kampala Uganda

Introduction: Worldwide sickle-cell disease has been identified as the most widespread genetic disorder highest in low-income countries. In Uganda, approximately 25,000 babies are born with sickle cell disease every year. Mulago National Referral Hospital runs the oldest and largest specialized sickle cell clinic where over 17,000 people living with sickle cell disease are registered in care. This study assessed the proportion of adolescents with sickle-cell disease retained in care and associated factors. Methods: A cross-sectional study was conducted at Mulago National Referral Hospital. The study involved 309 adolescents enrolled on sickle-cell care from 2013 to 2017 who were living with sickle-cell disease. Retention was defined as having not missed a clinic appointment for at most six months. Modified Poisson regression analysis was used for this study. Results: A total of 309 adolescents from Kampala and Wakiso districts participated in the study. Their mean age was 11.8±2.1 years, majority of the respondents 86.1% (266/309) were aged 10-14 years, with 55.7% (172/309) living with both parents and 64.4% (199/309) residing in Kampala. Most 92.9% (289/309) were still in school, 74.1% (229/309) had at least primary education, and 53.1% (164/309) were female. Nearly 43.7% (135/309) were enrolled in care in 2013, and 87.4% (270/309) took less than two hours to reach the hospital. The retention level was 42% (130/309) 95% CI: 36.7, 47.7. Retention was associated with a positive attitude to keeping clinic appointments (aPR = 1.84; 95% CI: 1.02-3.30); not receiving enough medicines to last until next appointment, (aPR = 0.76; 95% CI: 0.58-0.99) and spending more than two hours traveling to the clinic, (aPR = 0.56; 95% CI: 0.32-0.99). Conclusion: Retention in SCD care was low among adolescents. Improving waiting times and having multi-month drug dispensing to last till next visit may improve retention in care.