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Views of patients about sickle cell disease management in primary care

Sickle cell disease (SCD) is the most common inherited blood disorder in England. Without prompt diagnosis and proper treatment, it can be a serious source of morbidity and mortality. The complications of SCD can lead to frequent hospital visits and appropriate management is needed to minimize the risk of developing such complications. SCD clinical guidelines recommend that patients see a general practitioner (GP) for routine examination every six months and more often if new problems arise or their treatment protocol changes. In addition, immunizations, prescriptions and other preventive care measures need to be delivered effectively by GPs to prevent recurring infections and pain crisis. In a questionnaire study published in JRSM Short Reports, Ghida AlJuburi and colleagues investigated the views of patients with SCD about the quality of care they have been receiving from their primary healthcare providers and what they thought was the role of primary care in SCD management.

The results of the study showed that many patients with SCD are not satisfied with the quality of primary care services that they are receiving. Thus, most do not make use of GP services for management of their SCD. However, the majority of the patients did wish for greater involvement from their GP services, even if it was just to refer them to a tertiary care facility or social support. When asked how satisfied patients are with assistance given by their GP to help manage their SCD based on a scale of 0–10 (0 being not satisfied at all and 10 being very satisfied), the majority (54%) scored satisfaction with their GP as 5 or less while 43% scored a 6 or above and 3% did not answer the question at all. Collecting prescriptions was the reason most cited for visiting the GP's office. The findings of the study provide will help in the development a disease-specific intervention which aims to improve patient care and help to ensure that management in primary care is optimized through the establishment of a Local Enhanced Service.


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