Children and young people living with sickle cell disease face numerous challenges as they transition from paediatric to adult health care services. To address these barriers, the NHS Race and Health Observatory has partnered with the Sickle Cell Society to conduct research and develop practical resources aimed at improving transition care and enhancing the quality of life for those affected.
The transition period from paediatric to adult care can be particularly difficult for young people with sickle cell disease, especially in non-specialist settings where they often receive inadequate care. This new initiative seeks to capture the experiences and perspectives of these young patients, whose voices have frequently been overlooked, to ensure they feel supported and empowered to manage their condition as they enter adulthood.
Approximately 300 babies are born with sickle cell disease each year in the UK. The 12-month programme will focus on addressing the long-term needs of patients, typically between the ages of 12 and 18, to provide practical solutions to improve their care during the transition. The project will explore a range of strategies, including the evaluation of new and existing apps, online resources, and policy initiatives, as well as gathering insights from face-to-face interactions with patients, families, carers, and healthcare professionals.
Engagement with health bodies, red cell specialists, and hospital staff during hospital ward visits and A&E admissions will play a crucial role in understanding the gaps in care and identifying successful outcomes that can be applied to the sickle cell transition process.
Professor Habib Naqvi, chief executive of the NHS Race and Health Observatory, emphasised the significance of this work, stating:“The insights from this work will significantly impact the future of young people living with sickle cell disease. The transition period is a challenging time for young people, and by improving trust within the care pathway, we can tackle gaps in care, learn from successful outcomes in transition from other disorders, and ensure excellent patient-centred care is provided.”
The research will evaluate interventions aimed at improving transition care, assess patients' quality of life, and compare their experiences with those of individuals with other chronic conditions. The project will also analyze patient appointment patterns and examine educational and employment outcomes through data linkage.
This pioneering programme aligns with broader efforts to address disparities in sickle cell care, ensuring that young patients receive the support and pain management they need during this vulnerable stage.
