Title: Transitions from paediatric to adult services for sickle cell disease (SCD): a prospective qualitative study examining young adult patients’ experiences
Funder: Department of Health and Social Care

Abstract: Transitions from paediatric to adult services cause problems worldwide, particularly among patients with chronic disease and complex health needs requiring integrated care. Transitional care is a key area within the NHS and sickle Cell Disease (SCD) provides an excellent case study for examining transitions. SCD is complex and growing rapidly in the UK, and there is little UK-based research on this topic. In the UK, over 15,000 people live with SCD, 2/3 of them in London. It is the fastest-growing genetic blood disorder in England with increasing associated mortality and morbidity: between 2001/2 – 2009/10, SCD-related hospital admissions increased more than 50%. The highest rates of emergency admissions were among those who recently transitioned from paediatric to adult care, suggesting an urgent need for improvement in transitional care. Yet we lack empirical evidence about the support patients need during such transitions. Transition is a time of increased medical vulnerability and morbidity, and increased responsibility for self-care. Despite the importance of effective transitioning for managing SCD, many young adults reach the transition period without appropriate support. This can have major negative consequences for them and for the health services, including missed appointments, poor treatment compliance and increased rates of emergency hospitalisations, sometimes with life threatening consequences. For patients with SCD, prevention and recognition of complications are crucial to maintain health. Poorly-managed transitions have high economic and social costs to patients, their families and health services. In this qualitative study, we examine the experiences of SCD patients aged 13-21 as they transition from paediatric to adult NHS services. The aim is to examine how transitions can be improved, with a strong focus on exploring patients’ own experiences of the healthcare services they receive and taking into account their broader social context, such as education, and relationships (e.g. family, friends). Research questions: (Q1) What support and information resources are required by patients to improve transitional care? (Q2) What do patients perceive as the ideal process of healthcare transition? (Q3) How does healthcare transition affect young adults’ healthcare-related behaviour (e.g. self-management) and quality of life over time? (Q4) How can patients’ personal histories (past SCD crises and general health) enable or hinder transition success? (Q5) How does social context (e.g. carer relationships) affect transition success (Q6) How can lessons from SCD be applied to other transitions? We will collect and analyse data from patient interviews, patient audio diaries, case notes and provider interviews. Outputs from this research will include (but are not limited to): SCD transitional care support and information resources co-produced with patients; SCD transitional care digital story co-produced with patients to raise awareness about the findings; recommendations for provider training and support for improving transitions; analysis of how our findings can apply to other related chronic conditions (SCD comorbid factors or which share its symptoms and care needs) by identifying generic aspects of transition e.g. how patients’ social contexts might shape their ability to move successfully into adult care.

Lay abstract: Transitions from paediatric to adult services cause problems worldwide. Sickle Cell Disease (SCD) - a chronic debilitating condition that causes cumulative damage to multiple organ systems 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. Over 15,000 people live with SCD in the UK; it is the fastest growing genetic blood disorder. 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. Poorly-managed transitions have high economic and social costs to patients, their families and health services. Many young adults with SCD reach the transition period without appropriate education or support. Our research will bring together a unique group of multidisciplinary researchers (combining clinical, social science and adolescent health expertise), and will deliver value for money to patients and the NHS by contributing towards improving patient experience and care during SCD transitions; care that will have a significant lifelong health, economic and social impact. We aim to improve services to reduce emergency hospitalisations, and improve health outcomes and quality of life, which will reduce social, physical, and financial costs of SCD. This qualitative research will examine the experiences of patients with SCD (13-21 years old) as they transition from paediatric to adult NHS services, analyse how their experiences of care are linked with their general life experiences (i.e. look beyond the clinical to other areas such as education and relationships) and obtain their perspectives on how transitions can be improved. Our research questions are: (Q1) What support and information resources are required by patients to improve transitional care? (Q2) What do patients perceive as the ideal process of healthcare transition? (Q3) How does healthcare transition affect young adults’ healthcare-related behaviour (e.g. self-management) and quality of life over time? (Q4) How can patients’ personal histories (past SCD crises and general health) enable or hinder transition success? (Q5) How does social context (e.g. carer relationships) affect transition success? (Q6) How can lessons from SCD be applied to other transitions? We will collect and analyse data from interviews with patients, patient audio diaries, patient medical case notes and interviews with service providers (paediatric transition teams and adult services). Participants will be recruited from London and Birmingham. Outputs from this research will include (but are not limited to): SCD transitional care support and information resources co-produced with patients; SCD transitional care digital story co-produced with patients to raise awareness about the findings; recommendations for provider training and support for improving transitions; analysis of how our findings can apply to other related chronic conditions by identifying generic aspects of transition e.g. how patients’ social contexts might shape their ability to move successfully into adult care.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: BLOOD