Clinical characteristics of adolescents and adults with Sickle Cell Disease and barriers to transition to adult care at Mulago Hospital, Uganda: A mixed methods study

Background Outcome of patients with sickle cell disease (SCD) has improved greatly over the past 60 years with several studies showing improved survival into adulthood due to advancement in medical care. A successful transition is critical for optimal health outcomes. However, health care delivery systems that support the optimal transfer from pediatric to adult care have not kept pace with the growing adult population. Mulago pediatric sickle cell clinic has faced multiple challenges with transition to adult care that are not well documented. The objective of this study was to describe the clinical characteristics of adolescents and adults with sickle cell disease and barriers to adult care at Mulago hospital. Methods This was a mixed methods cross sectional study with both qualitative and quantitative data collection methods conducted among patients attending the pediatric sickle cell clinic at Mulago hospital, their caregivers and health care workers. A registry and medical records review was done to obtain data for the quantitative arm. The qualitative component consisted of 30 in-depth-interviews involving patients and care givers and 10 key informant interviews with healthcare workers. Quantitative data was coded and entered into Epidata version 4.6 and then exported to STATA 14 for analysis. Qualitative data was analyzed using the content thematic approach. RESULTS The proportion of patients aged 14 years and above still attending the pediatric clinic was 21.6%. Barriers to transition of care as expressed by care givers and patients were limited knowledge on transition, attachment to their pediatric careers and negative experiences in the adult clinics. Health care system barriers included poorly organized adult clinics with few working days compared to the paediatric clinic that operates daily. This was compounded by lack of policies and guidelines on transition, inadequate human resource and limited access to the essential drugs in the adult clinics. Conclusions and recommendations There is still a large proportion of adults and young adults (AYAs) still attending the pediatric sickle cell clinic and barriers to transition were not only sociodemographic but also psychosocial and health system related. There is need for better planning and preparation with better patient centered interventions in order to improve transition.