Shared learning database

University Hospitals Bristol NHS trust
Published date:
September 2009

The guidelines published by NICE in 2008 prompted us to audit our practice in secondary care and implement changes. Involvement of regional networks proved crucial to the implementation of specific action plans.

Guidance the shared learning relates to:
Does the example relate to a general implementation of all NICE guidance?
Does the example relate to a specific implementation of a specific piece of NICE guidance?


Aims and objectives

To audit compliance with NICE CG71 in a specialist clinic and use the action plan from this audit to drive improved compliance with guidelines across primary and secondary care within the local health community, and across the wider health community.

1. To audit current practice in a specialist clinic providing secondary care, regional, and paediatric services for patients with genetic lipid disorders.
2. To identify key action points and to devise an action plan for best practice in the diagnosis and management of this condition in line with NICE guidelines.
3. To work effectively with local and regional clinical networks to facilitate effective implementation of this action plan across both primary and secondary care, and also the wider health community.

Reasons for implementing your project

Familial Hypercholesterolaemia (FH) is the commonest Autosomal Dominant single gene disorder affecting 1 in 500 individuals; around 100,000 in the UK and 3000 in our local health community (Avon). Early diagnosis is essential, as 50 % of untreated patients suffer a heart attack or cardiac death before the age of 55. Treatment is effective and economical allowing individuals to have a normal life expectancy if begun early. However, current estimates suggest 75% of patients remain undiagnosed. We run an Adult Lipid Clinic and Joint Paediatric Lipid Clinic service at University Hospitals Bristol. We also provide a regional LDL-apheresis service for patients with FH unresponsive to drug treatment. We identified audit standards based on recommended criteria in the audit support document for this guideline, and on priority recommendations within the guideline itself. A detailed case based review was carried out in 86 patients. A separate analysis was carried out in patients who presented to the clinic in the last 2 years (since Nov 2007).

How did you implement the project

We were compliant with 6 standards. Compliance was 100 % except where exceptions were allowed: patients intolerant of statins, and those who did not wish to see a dietician.
- Using Simon Broome Criteria.
- Recording a three generation pedigree.
- In not using a CHD Calculator to assess risk.
- In giving pregnancy advice.
- Achieved cholesterol <50% of the baseline (or on intensive treatment).
- Seen by a specialist dietician

Compliance was poor for 4 standards:
- Only 50% of first degree relatives of index cases had cholesterol measured in response to a recommendation to contact their GP for family screening.
- Smoking advice was only given and documented in 50% of cases.
- Structured annual review was only carried out, or specific advice given to GPs regarding annual review, in 45% of cases
- Baseline ECG was only carried out in 15% of cases. We were non compliant with 2 standards:
- Patients were not recorded on a national database
- Patient information was not offered to patients

Key findings

Key issues:
Written patient information - we developed an information leaflet elaborating the condition to be handed over to patients in the clinic. An educational DVD sourced from HEART UK aimed specifically at young adults is also now being offered at the adult or paediatric clinics. Mutation testing: Despite advice to consult their GP for cholesterol testing only 50% of potentially affected relatives were being screened. Data from this audit and action to develop a local genetic service formed the basis of action to set up a cascade screening programme for the South West.

Key learning points

This audit of a secondary care clinic highlighted communication with primary care as crucial to both diagnosis and long term management of this condition locally. GPs were often unaware of recommendations to screen family members. A nurse led screening programme across the wider health community seeks to address these issues. There was a clear over-representation of social class 1-3 in this secondary care clinic, and this formal cascade screening programme would therefore also address key health inequality issues. Individual PCTs were initially reluctant to consider an approach to fund cascade screening and gave a number of reasons:
- Recommendations from NICE were guidelines only and not guidance.
- Family screening using DNA testing would potentially identify patients resident on other health communities but cost would fall on the host PCT.
- Cost of genetic testing was high.

These issues were addressed by an established clinical network of lipid specialists working with the regional cardiac and stroke network to provide recommendations to local PCTs.Positive benefits identified by PCTs were:Cascade testing addressed key health inequality issues A DNA based approach to family screening only required one- off testing in each patient.Overall investment was comparatively modest, and screening was highly cost effective (less than £2000 per cardiac event prevented) When the 'Vascular Checks' programme is rolled out large numbers of patients with very high cholesterol will be identified. Only a small proportion will have FH, and having an effective diagnostic and screening system in place will reduce the risk of over or under-treatment. Beyond the audit:The publication of the guidelines has created much awareness about Cascade screening programme.Has enabled us to network more closely with our colleagues in the region (through regular informal meeting) to improve practice. Has improved our skills to maintain documentation of advice given during our consultation.

Contact details

Mathangi Balasubramani
Specialist Registrar
University Hospitals Bristol NHS trust

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