The recommendations, published today in the The Lancet Haematology, highlight the growing need for a consistent and universal evidence-based care delivery model. Sickle cell disease (SCD) is a designated public health priority by the World Health Organisation and more than 400,000 babies are born with it every year. In the UK around 300 babies are born with the condition every year, over 14,000 affected people and over 80% patients in greater London.
In the past many affected patients died in early childhood but the prognosis for sickle cell disease has improved and more patients are surviving into adulthood. However, this poses a new challenge as patients need to transition from paediatric care to adult services. This shift is a period of high risk and can lead to the highest usage of emergency services. In England, the highest number of emergency admissions were reported in patients who had recently transitioned from paediatric to adult care.
The team of researchers from the African Research and Innovative Initiative for Sickle cell education (ARISE) led by Dr Baba Inusa, have highlighted six recommendations to be considered in any sickle cell disease care transition plan for young people.
It is important and vital to highlight the plight of young people living with chronic disorders. Over the next three years, we plan to investigate the challenges in high, low and middle income settings in order to formulate culturally adaptable policies for sickle cell disease. – Lead author Professor Baba Inusa, paediatric consultant at Evelina London Children's Hospital and Professor of paediatric haematology in King’s School of Life Course Sciences.
The recommendations (SICKLE) include:
- Skills transferred to patients from an early age to manage their own condition, including how to self-manage symptoms and how to recognise when professional advice is required.
- Improving self-efficacy in young people and centring their voice in their health-care plan to ensure they are properly motivated in managing their care.
- Every young person transitioning from paediatric to adult care should be supported by a community health worker or nurse navigator who is trained to support them.
- All patients should have a good understanding of sickle cell disease before transfer of care. This could be enabled by multidisciplinary task forces to develop a curriculum and handbook for the transition.
- All young people should know when their care will be transferred and who the adult provider is or could be.
- Assessment of the readiness of a young patient should be made before the transition goes ahead.
The aim of recommendations is to reduce the risk to patients who are transitioning from paediatric care to adult care.
The review also recommends adolescent transition programmes to collect data to estimate the long-term effect of sickle cell disease on health outcomes, efficiency of health-care services, educational and career attainment and other indirect economic costs.
Download the article for free here.