Transition of sickle cell disease patients from pediatrics to adult care at Mulago hospital: proportion, characteristics and barriers.

Abstract

Background: Outcome of patients with sickle cell disease 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 especially in the developing countries. Mulago pediatric sickle cell clinic has faced multiple challenges with transition to adult care that are not well documented. This study sought to describe the barriers to transition of patients with sickle cell disease from the pediatric to the adult clinics. Objectives: To determine the proportion of SCD patients aged 14 years and above attending the pediatric sickle cell clinic, describe their sociodemographic and clinical characteristics and barriers to transition of care from the pediatric to the adult clinics 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 caring for them. A registry and medical records review was done to obtain data for the quantitative arm. The qualitative component consisted of 30 indepth-interviews involving patients and care givers and 10 key informant interviews with Health 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 content thematic approach.RESULTS: The proportion of patients aged 14 years and above attending the clinic was 21.6%. Of 384 SCD patients aged 14 years and above who attended the clinic in 2019, majority (228/384;59.4%) were between 14 to 18 years old and over half (205/384;53.4%) were female. A half (214/384;53.3%) of the study participants lived within a 5 kilometers radius of Mulago hospital. Almost all the participants had HbSS (377/384;98.2%). Thirty four percent (130/384) of the patients were below the 5th percentile weight for age. Barriers to transition of care as expressed by care givers and patients were limited knowledge on transition, attachment to their pediatric carers, long distance to the adult care unit, negative experiences in the adult clinics as well as inappropriate age of transition. Health care system barriers were poor service delivery (poorly structured adult clinic with few working days, absence of dedicated lab. This was compounded by lack of policies and guidelines on transition, inadequate human resource and drug shortages and limited access to the essential drugs in the adult clinics. Conclusions and recommendations: One in four patients attending the sickle cell clinic at Mulago hospital are 14 years of age and above. Majority of these are in the adolescents aged 14 to 18 years of age. Barriers to transition into adult care included health system factors such as lack of a written policy on transition, drug stock outs in adult clinics, poorly structured adult clinic and inconvenient work hours. Patient and care giver factors included limited knowledge on transition, negative experiences in the adult care, and attachment to pediatric carers. Immediate interventions to improve transition should be put in place such as a well written policy on transition, allocation of an area set apart for AYAs with sickle cell disease that has a well-structured environment, ideal for chronic care management. Health care workers need to provide quality information about transition to patients and their families in order to relay patient fears about adult care. Keywords: Transition, sickle cell disease (SCD), Paediatrics