Familial Hypercholesterolaemia [FH] is a common inherited disorder of lipid metabolism causing high levels of low-density-lipoprotein cholesterol [LDL-C], which frequently lead to early coronary heart disease [CHD]. Roughly half of men with FH, if untreated, will have developed clinically evident CHD by the age of 55 years, while affected women from the same families typically develop CHD ~10 years later than their affected male relatives. A significant reduction in the mortality and morbidity of the disease can be achieved through changes in lifestyle and the use of statins to lower cholesterol, but currently the vast majority of affected individuals in the UK remain undiagnosed [probably 85% of the predicted 120,000 cases].Testing the families of known cases of FH [cascade testing] can identify those with FH, and modelling indicates this will be cost-effective.
Recently NICE have published evidence-based recommendations for the identification and management of patients with FH.
An audit to explore the organisation and care within lipid clinics for the management of FH, based on these recommendations has been published by the Clinical Effectiveness and Evaluation Unit [CEEU] of the Royal College of Physicians Clinical Standards Department. The project was undertaken as a pilot project and surveyed 12 sites in England and two in Wales.
The audited pilot has an organisational and a clinical component – the first to establish the make up of the service, the second to identify how care within the service is delivered. Information collected covers the key priorities outlined in the NICE guideline and includes:
Subject to funding it is anticipated that a full national audit will be undertaken in 2009/10. This will provide a clear picture of the range in quality of management of FH patients across England at the moment. More importantly, over the next few years we should be able to see a steady improvement in the quality of care, as hospitals implement the NICE guidelines.
Further information can also be obtained by contacting;
Kristina Pedersen, FH Audit Project Manager
Tel: 020 3075 1500
Email: Kristina.Pedersen@rcplondon.ac.uk