Assessment of Transition Readiness in Adolescents with Sickle Cell Disease and their Caretakers, A single institution experience

Abstract

AIMSickle Cell Disease (SCD) is associated with high child mortality and birth incidence in sub-Saharan Africa. Improved SCD medical services in Ghana aims to enhance survival into adulthood, creating emerging need for transition from pediatric to adult care. Anticipating transition for adolescents with SCD, we sought to understand patient and caretaker perspectives on transition to adult care within Ghana.MATERIALS AND METHODSStructured interviews were conducted with a sample of patients ages 12–15 years and accompanying adults at Ghana’s Komfo Anokye Teaching Hospital Sickle Cell Clinic (KATH SCC) covering four areas: SCD medical knowledge, symptom self-management, psychosocial impact, and transition preparation.RESULTSIn total, 46 children (mean age 13 years) paired with 46 adults were interviewed. Most children and caretakers had some knowledge about SCD and disease management. At least one-third lacked knowledge about SCD as an inherited condition. Youth were significantly more concerned about family burden and social stigmatization than adults. Most were unaware that patients are expected to switch care to adult medical providers by age 15 years, but were willing to transfer if needed.CONCLUSIONSOur clinic-based assessment at KATH SCC identified needs of adolescents and caretakers for education and counseling about disease, self-management, transition, family burden, and stigmatization. These findings provide insights into perspectives and educational gaps of families treated for SCD. Results suggest consideration of transition planning for adolescents with SCD and their caretakers in Ghana. Generalizability of our findings and practical methods to address needs for transition within Africa remain to be tested.

Using Implementation Science to Improve Transition for Adolescents and Young Adults with Sickle Cell Disease

“…At the Individual Characteristics level, previous literature has highlighted the importance of patient transition readiness, 23,24 and our data suggest that caregivers also need to be prepared for patient transition, especially when addressing adult-specific challenges, and that promoting patient and provider advocacy is an important component for successful transition.…”

Establishing a Sickle Cell Disease Registry in Africa: Experience From the Sickle Pan-African Research Consortium, Kumasi-Ghana

“…The global number of newborns with SCD is estimated to increase to about 400,000 by the year 2050 with 85% expected to be born in sub-Saharan Africa ( Piel et al, 2013a ). Implementation of early diagnosis of SCD in newborns and a comprehensive management plan including penicillin prophylaxis, vaccination, disease-modifying drugs, screening for and prevention of complications, supported with health maintenance have been shown to significantly reduce mortality and prolong the life of patients ( Piel et al, 2013a ; Kwarteng-Siaw et al, 2017 ). In Africa, there are limitations in standards of care for management of SCD, skills development for health care professionals in SCD, and comprehensive databases of patients for monitoring clinical care ( Diallo and Tchernia, 2002 ; Wonkam and Makani, 2019 ; Oron et al, 2020 ; RFA-HL-17–006, 2021a ).…”

Stigma Associated With Sickle Cell Disease in Kumasi, Ghana

“…While there are limited data available about the survival of individuals with SCD in sub-Saharan Africa (Kato et al, 2018), early newborn screening and improved services are expected to enhance disease survival rates (Kwarteng-Siaw et al, 2017;Mulumba & Wilson, 2015). Developing partnerships between high-resource countries and countries in Africa to support the training of health-care workers, research, and sharing of knowledge can help reduce the SCD burden in Africa (Kato et al, 2018).…”

“…Developing partnerships between high-resource countries and countries in Africa to support the training of health-care workers, research, and sharing of knowledge can help reduce the SCD burden in Africa (Kato et al, 2018). There is a need for providers and health care systems to better support longitudinal care as more people make the transition from pediatric to adult services (Kwarteng-Siaw et al, 2017). An exploration of SCD stigma in Ghana from the adult patient perspective has not been well documented in the literature.…”