Pediatrics & Therapeutics
Open Access

Abstract

The Evidence Base for Transition Programmes for Adolescents with Sickle Cell Disease

Baba PD Inusa, Nana Bosompra, Camilla Cabral, Joanna Howard, Luhanga Musumadi and Kofi Anie

Background: In the United Kingdom (UK), sickle cell disease (SCD) is one of the most common genetic disorders at birth and worldwide millions are affected with the disorder. Transitioning young people with chronic illness from paediatrics to adult care is a complex process and it needs to be a planned and individualized process.

Objective: To review the existing literature on transition programmes for adolescents with SCD in the UK.

Methods: Online databases were used to search for studies using the key words: ‘sickle’, ‘adolescent’, ‘transition’, ‘England’, ‘UK’.

Results: There are no studies that evaluate the efficacy of transition services for people with SCD in the UK. A multidisciplinary approach with the involvement of patients and parents is essential is important to the success of the transition programmes. This study encountered a number of obstacles in describing the evidence base for SCD transition programmes due to (i) limited well-designed research studies and (ii) the lack of evaluation of existing guidelines using clinical indicators. This is despite the fact that other aspects of SCD management have benefited from well-designed studies and randomised-control trials.

Conclusion: In view of the increasing number of young people with SCD surviving to adulthood, there is a need to strengthen transition services to enable them to become independent adults. More good quality studies are necessary to create an evidence-base to inform ways to deliver better care in the UK.