clinical characteristsics of adolescents and adults with sickle cell disease and barriers to transition to adult care at Mulago Hospital Uganda; A mixed methods study

TL;DR

This study explores the challenges faced by adolescents and adults with sickle cell disease transitioning to adult care at Mulago Hospital in Uganda.

Contribution

The study identifies both patient and health system barriers to transition in a setting with limited documented data.

Findings

21.6% of patients aged 14 and above still attend the pediatric clinic.

Barriers include lack of transition knowledge, attachment to pediatric care, and poorly organized adult clinics.

Health system issues include inadequate policies, human resources, and drug availability in adult clinics.

Abstract

Background
Over the past six decades, advancements in medical care have significantly enhanced outcomes for individuals with sickle cell disease (SCD), with studies demonstrating increased survival rates into adulthood. A smooth transition from pediatric to adult care is essential for maintaining positive health outcomes. Nevertheless, healthcare systems have struggled to adapt, leaving gaps in support for the expanding adult SCD Population. Mulago Pediatric Sickle Cell Clinic has faced multiple challenges with the 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 method 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 caregivers 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 the transition of care as expressed by caregivers and patients were limited knowledge of 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 pediatric clinic that operates daily. This was compounded by a lack of policies and guidelines on transition, inadequate human resources, and limited access to the essential drugs in the adult clinics.
Conclusions and recommendations
There is still a large proportion of adolescents and young adults still attending the pediatric sickle cell clinic and barriers to transition were not only sociodemographic but also psychosocial and health system related. There is a need for better planning and preparation with better patient-centred interventions to improve transition.