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Looking forward in lipids
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Jun 24, 2008, 15:44

LookingForwardinLipids

Looking forward in lipids

Two workshops called Looking Forward were recently hosted by H·E·A·R·T UK, one held in London on 28 February 2008 and one in Manchester on 13 March 2008. The latest issues driving lipid management in the UK were discussed by the 80 hospital lipid specialists and specialist nurses who attended and there was a focus on the management of the challenging condition, familial hypercholesterolaemia (FH). The meetings were supported by an unconditional educational grant from Genzyme.

Chairing and introducing the London meeting, Professor John Betteridge said “There is a significant amount of research being undertaken, and much already completed, in lipids. Whilst this research has answered many questions, there remain many unanswered ones. Some of these concern familial hypercholesterolaemia.”

Professor Paul Durrington, who chaired the Manchester workshop, emphasised the importance of diagnosing, treating and cascade testing in FH. “This is an important area of lipid medicine, and one where interesting developments are emerging including genetic testing and new treatment options.”

Department of Health FH cascade testing audit project

The Department of Health FH cascade testing audit project which started in 2004 and has now made recommendations to the DH was presented by Professor Stephen Humphries (London) at the London workshop and by Dr Gaye Hadfield (London) at the Manchester event. Previous work has shown that cascading FH testing through the family members of an individual with FH is feasible in the UK. Indeed, much has been learnt from the cascade testing programme which has been running in the Netherlands for the last five years, particularly that cascade testing is cost-effective with respect to cost/life years gained.

Recommendations to DH for cascade testing

  • An integrated national infrastructure is needed so that relatives, wherever they live, have access to cascade testing
  • DNA testing should underpin FH cascade testing since LDL-C measurements have a poor diagnostic sensitivity and specificity
  • Specialist services are needed for young people with FH – these are not currently available in most areas of the country
  • Education and incentives are needed for primary care teams so that newly diagnosed FH patients are offered appropriate care

Survey of the management of patients with lipid conditions in the UK

A varied agenda began with presentation of the findings of a survey of UK lipid clinics which was undertaken by H·E·A·R·T UK and sponsored by Genzyme earlier this year.

Presenting the results at the London meeting, Dr Dermot Neely (Newcastle upon Tyne) said “This UK-wide survey conducted electronically attracted 67 responses from clinics of various sizes. Although not representative of every lipid clinic, it helps us gain a greater understanding of lipid service provision and practice around the UK and understand where the greatest challenges lie.”

The survey showed that there are great variations in where patients with lipid disorders are cared for – clinical biochemistry/chemistry, chemical pathology and lipid clinics were the most commonly cited departments, and chemical pathology, cardiology and diabetes & endocrinology were the most commonly cited directorates. The size of the clinics and number of staff also varied greatly.

As might be expected, the survey highlighted that medicine compliance is an issue in lipid management. “FH patients may be required to comply with their treatment regimen for 30 or 40 years and so it is vital that they understand the reasons for this; if not they are likely to find compliance difficult,” commented Dr Neely.

The survey also revealed variations across the country in the provision of LDL-apheresis with just 7 of the clinics responding to the survey treating a total of 32 patients with this procedure. Although the survey may not have shown the whole picture as it estimated that 50 patients currently receive LDL-apheresis, it was felt that access for those patients eligible for this treatment is patchy across the country and NHS funding issues often provide barriers to effective patient care.

The survey showed that despite nearly 600 children with FH being treated around the UK, there is little provision for the specialised management of this group with children often treated in the adult clinic setting. The NICE FH guideline (due for publication in August) may influence change in this area as the draft recommendations state that children and young people being investigated or treated for FH should be referred to a specialist with expertise in FH in ‘an appropriate child-focused setting’.

“We need to move towards a unified standard of care across all UK clinics,” concluded Dr Neely at the London meeting, “so that all our FH patients receive the same high quality of care, wherever they are in the UK.”

DNA testing in FH

The subject of DNA testing as an element of FH cascade testing was discussed at both meetings and its importance in confirming FH diagnosis within a cascade testing programme was generally agreed. DNA testing to complement cholesterol testing for diagnosis of FH is expected to be a key recommendation of the NICE guidelines on FH (due to be published in August 2008) and it was acknowledged that appropriate funding will be key to effective implementation.

New and future treatments for FH Patients

New and potential future treatment options for FH patients were discussed at the meetings by Dr Devaki Nair (London) and Dr Nigel Capps (Shropshire), particularly for those patients who do not respond sufficiently to statins alone.

A potentially interesting new bile acid sequestrant in a tablet formulation called Cholestagel [colesevelam HCl] for instance, promises to make this drug class much more palatable to take, potentially increasing compliance. The audience was also introduced to one of the most interesting developments on the horizon, the anti-sense inhibitor of Apo B, mipomersen (an investigational agent which is not currently licensed in the UK). This investigational agent can reduce LDL levels by another 50% on top of statins and could ultimately offer an alternative to LDL apheresis.

Both meetings concluded with a review of the latest information from NICE in relation to cardiovascular conditions. A special feature on new draft NICE guidance on FH follows and sums up many of the key points discussed.


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