Prevalence and Factors That Affect Transition From Paediatric to Adult Services Among Adolescents With Sickle Cell Disease in Webuye County Hospital

Abstract

Background: New advances in medicine in the last thirty years have made it possible for children with sickle cell disease to live past their childhood period. Children with Sickle Cell Disease (SCD) are now surviving well into their adolescent years and ultimately transitioning from paediatric to adult services. Adolescents with sickle cell disease must learn how to navigate the dynamic health care system besides dealing with the societal stigma associated with Sickle Cell Disease. In view of ensuring good health care outcomes and continuity of care for adolescents with SCD, transition should be well understood and given priority. Study Objectives: The study sought to determine the proportion of adolescents with SCD who transition from paediatric to adult services and those who attend at least two scheduled adult clinic visits thereafter at Webuye County Hospital (WCH) and to explore the factors that affect successful transition from paediatric to adult services among adolescents with SCD. Study design: We employed a mixed method study approach in which we conducted both retrospective cohort study and cross-sectional survey. Methods: We included all eligible adolescents with SCD aged between 12-19years enrolled in paediatric and adult medical outpatient clinics at WCH between January 2015 and April 2020. We obtained socio-demographic and clinical characteristics from the patient physical files. Different variables were analysed using STATA version 12.0 and quantitative data was summarised into frequencies, proportions and measures of central tendency and p value of <0.05was considered significant. Adolescents with SCD in active care and those lost to follow up were contacted via telephone and invited to the hospital to participate in the study. Focus group discussions and in-depth interviews were conducted for adolescents still in active care and those lost to follow up respectively to explore the factors affecting transition to adult services. Key informant interviews were conducted among healthcare workers using open ended questions interview guides. Qualitative data was transcribed and translated accordingly, and scripts coded into emerging themes. Results: A total of 80 adolescents with SCD (55% male) with a median age of 16 (IQR 14- 17) years were enrolled in the study. 68 (85%) out of the 80 adolescents were living in Bungoma county with 58.5%living in villages adjacent to the hospital. The median age at first enrolment to the paediatric clinic was 7(IQR 5-8) years with an overall duration of...........................................................................................................