What is Sickle Cell Disease?
Sickle Cell Disease (SCD) is a chronic multi-system disorder resulting in debility, organ damage, frequent hospitalisations and reduction in lifespan. It affects over 12,500 people in England. SCD is the nation’s most common genetic disorder with approximately 240,000 carriers.
Despite this, there is minimal awareness of this disorder and there is little or no evidence available in the UK as to what matters most to those living with SCD, nor any tools available to appropriately and reliably capture their experiences of care. In the London Borough of Brent, SCD patients were being under-treated for their condition.
36% SCD related admissions <2 days, 74% total bed days due to repeat admissions and the Health Economic evaluation estimated at £670,000.
Sickle Cell Disease Patient Reported Experience Measure (SCD PREM)
CLAHRC Northwest London, in partnership with the Sickle Cell Society (SCS), commissioned the first nationwide survey of experiences of SCD care in the UK. The PREM was designed by Picker and was identified as a key requirement for evaluation of services.
With three audience-tailored surveys (children, parents and adults), the PREM recruited 722 child, parent and adult participants nationwide.
The survey was co-designed with people in focus groups to ensure it covered areas of care that are most important to patients and their families, as well as capturing key elements of person-centred care. It concentrated on access to care services, information and support for their condition, as well as capturing views on healthcare across inpatient, outpatient and emergency care settings.
It has since been adopted by the Sickle Cell and Thalassemia South Thames Network for annual feedback from patients to target improvements in care.
Sickle Cell Transition
With our partners at LSHTM and SCS (£458K NIHR HS&DR grant) we are studying the experiences of 13 to 21 year olds with SCD as they transition to adulthood and adult services. These research findings inform and expand the content of SCS educational programmes designed to empower young people to self-care and self-manage their physical and emotional needs as they transition into adulthood. To share the learning from this innovative collaboration we have published our experiences of the process of patient involvement and co-production.