Transitions from paediatric to adult services for sickle cell disease
Research type
Research Study
Full title
Transitions from paediatric to adult services for sickle cell disease (SCD): a prospective qualitative study examining young adult patients’ experiences
IRAS ID
161275
Contact name
Cicely Marston
Contact email
Sponsor organisation
London School of Hygiene and Tropical Medicine
Duration of Study in the UK
3 years, 4 months, 31 days
Research summary
Transitions from paediatric to adult services cause problems worldwide. Sickle Cell Disease (SCD) - a chronic debilitating condition that causes cumulative damage to multiple organs and acute pain episodes - provides an excellent case study for examining transitions: it is complex and growing rapidly in the UK, and there is a lack of UK-based research on this topic. In England, SCD-related hospital admissions increased more than 50% between 2001/02 and 2009/10 with the highest rates of emergency admissions among those who had recently transitioned to adult care, suggesting there is an urgent need for improvement in SCD care, particularly during transition. Many young adults with SCD reach the transition period without appropriate support. Poorly-managed transitions have high economic and social costs. The aim of this qualitative research is to examine the experiences of patients with SCD (13- 21 years old) as they transition from paediatric to adult NHS services, analyse how their experiences are integrated into their whole lives (i.e. look beyond the clinical) and obtain their perspectives on how transitions can be improved. Our research questions are: What support resources are required by patients to improve transitional care? What do patients perceive as the ideal process of transition? How does healthcare transition affect young adults’ healthcare-related behaviour? How can patients’ personal histories (past SCD crises) enable or hinder transition success? How does social context affect transition success? We will collect and analyse data from interviews with patients, patient audio diaries, patient medical case notes and interviews with service providers. Outputs from this research will include: SCD transitional care support resources co-produced with patients; SCD transitional care digital story; recommendations for provider training.
REC name
London - Dulwich Research Ethics Committee
REC reference
15/LO/1135
Date of REC Opinion
6 Aug 2015
REC opinion
Further Information Favourable Opinion