Skip to main content

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.

Comments

Popular posts from this blog

What is the difference between primordial prevention and primary prevention?

Primordial prevention and primary prevention are both crucial strategies for promoting health, but they operate at different levels. Primordial prevention aims to address the root causes of health problems and improve the wider determinants of health. It focuses on preventing the emergence of risk factors in the first place by tackling the underlying social, economic, and environmental determinants of health. This involves broad, population-wide interventions such as: Policies that promote healthy food choices: Think about initiatives like taxing sugary drinks to discourage unhealthy consumption, or providing subsidies for fruits and vegetables to make them more accessible. Urban planning that prioritises well-being: This could include creating walkable neighborhoods with safe cycling routes, ensuring access to green spaces for recreation and relaxation, and designing communities that foster social connections. Social programs that address inequality: Initiatives aimed at reducing pov...

Talking to Patients About Weight-Loss Drugs

The use of weight-loss drugs such as GLP-1 receptor agonists (e.g., semaglutide, tirzepatide) has increased rapidly in recent years. These drugs can help some people achieve significant weight reduction, but they are not suitable for everyone and require careful counselling before starting treatment. By discussing benefits, risks, practicalities, and  uncertainties, clinicians can help patients make informed, realistic decisions about their treatment. Key points to discuss with patients 1. Indications and eligibility These drugs are usually licensed for adults with a specific BMI. They should be used alongside lifestyle interventions such as dietary change, increased physical activity, and behaviour modification. 2. Potential side effects – some can be serious Common adverse effects include nausea, vomiting, diarrhoea, and abdominal discomfort. Less common but more serious risks include gallstones, pancreatitis and visual problems. Patients should know what to watch for a...

What makes a good doctor – and who gets to decide?

What Makes a Good Doctor? This is the question that Waseem Jerjes and I explore in the Journal of the Royal Society of Medicine . It is a key question that underpins the architecture of medical education, clinical practice, regulation, and professional identity. It cannot be answered by regulators, educators, or employers in isolation. It must be answered together – by doctors and patients – revisited throughout a career, and adapted as society and the profession change. Without that shared reflection, the danger is not simply disillusionment, but the erosion of the moral foundations of clinical work. As we enter an era when diagnosis will increasingly involve artificial intelligence and when performance metrics reward volume over value, reclaiming this question as a professional one is imperative. The integrity of our institutions – and of the practitioners within them – depends on reimagining excellence in inclusive, relational terms. A good doctor is not a flawless technician or a f...