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Patients' views on improving sickle cell disease management in primary care

Sickle cell disease (SCD) is the most common and fastest growing genetic disorder in England. SCD is an illness in which recurrent pain, also referred to as vaso-occlusive crisis, is a chronic concern. Primary care professionals therefore play a key role during the initial presentation of symptoms, as well as the management of long-term complications including such recurrent pain. In England, London residents account for approximately three quarters of all SCD admissions to hospitals, with the London Borough of Brent being one of the highest risk areas for SCD. Many aspects of SCD can be effectively and efficiently managed in primary care. Previous studies have shown successful interventions that move management of SCD, particularly uncomplicated sickle cell pain episodes, from tertiary towards primary care.

Focus groups may be useful for obtaining developmental input in managing SCD in primary care. In a paper published recently in JRSM Short Reports, Ghida AlJuburi and colleagues reported the findings of a focus group study held at the Sickle Cell Society in the London Borough of Brent. They aimed to identify patient and carer perspectives of general practitioner (GP) knowledge and treatment of SCD, and to identify areas in which improvements could be made. This information helped to design an educational intervention which could help further engage primary health-care professionals in the care and management of their sickle cell patients. The study was part of a wider service improvement programme to improve the management of SCD in the London Borough of Brent.

The study identified a number of barriers to patients with SCD and their carers engaging fully with primary care services. These ranged from practical difficulties accessing services when required, poor communication between primary and secondary care professionals and a perceived lack of confidence in the ability of primary care professionals to provide chronic disease management specific to SCD. This study highlighted that SCD patients and carers have many criticisms about the current quality of services for managing patients with SCD in primary care. The study also helped provide key themes and useful suggestions that have been used to develop an educational intervention for general practices that will be used to improve SCD management in primary care.

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