Shared learning database

Type and Title of Submission


Systematically identifying and managing Familial Hypercholesterolaemia in Primary Care across a PCT/CCG


Deploying audits centrally across all GP practices across a PCT/CCG to identify patients with Familial Hyperchelesterolaemia and add clinical prompts to support better management and contact tracing.


2011-12 Shared Learning Awards

Does the submission relate to the general implementation of all NICE guidance?


Does the submission relate to the implementation of a specific piece of NICE guidance?


Full title of NICE guidance:

CG71 - Familial Hypercholesterolaemia

Category(s) that most closely reflects the nature of the submission:

Is the submission industry-sponsored in any way?


Description of submission


To identify patients with familial hypercholesterolaemia and improve the management of this group of patients.


To prevent patients suffering heart disease as a result of failures to diagnose or manage Familial Hypercholesterolaemia.


The recorded prevalence of Familial Hypercholesterolaemia is below the level predicted and whilst NHS Healthchecks will pick up raised cholesterol in those who attend for them patients with Familial Hypercholesterolaemia would benefit from being on treatment at an earlier age. The NICE guidelines suggest referring patients with suspected Familial Hypercholesterolaemia to a secondary care consultant for genetic testing, management and contact tracing. The NICE guidelines recognise that the absence of a genetic abnormality does not exclude the diagnosis and that a diagnosis of possible familial hypercholesterolaemia can be made using the Simon Broome Criteria and managed in the same way. Secondary care don't have a list of registered patients.


We requested a Read Code for 'possible familial hypercholesterolaemia'. We licensed software that would allow us to run audits in all GP IT systems (except System one/TPP where the system supplier wouldn't allow this) across the PCT. This enabled us to audit and add clinical prompts. The audit identifies patients diagnosed with Familial Hypercholesterolaemia or possible familial hypercholesterolaemia. It then identifies all patients without a diagnosis or an entry to say they've been assessed against the Simon Brome Criteria with either a cholesterol over 7.5 mmol/l or a LDL cholesterol over 4.9 mmol/l. The first part of the Simon Broome criteria. It produces a list of patients which can be viewed by the practice and puts a prompt in the patients notes which appears when the clinician sees the patient prompting them to assess the patient using the Simon Broome criteria. Those that meet the criteria are diagnosed as possible familial hypercholesterolaemia. The audit also looks at the percentage of patients diagnosed with FH or possible FH and a cholesterol of under 5mmol/l and provides prompts where it isn't. It also looks at the percentage of patients diagnosed who have a recording of advising relatives and prompts where this is absent. The audits are loaded onto the GP clinical systems remotely there is no additional work for the practices or clinicians. Heart UK have been kept informed of this work

Results and evaluation

The results can be seen by each practice individually but also at a PCT/CCG level. 57 out of 61 practices have the audit running covering a population of about 275,000 patients. This audit was rolled out at the beginning of October 2011 across the PCT/CCG having been piloted in a single practice for the preceding month. Since launch an extra 21 patients have been added to practices Familial Hypercholesterolaemia register and 26 added to practices 'possible Familial hypercholesterolaemia' register. The combined prevalence has risen from 0.127 to 0.141 since launching this audit. NICE estimate the prevalence to be 0.2. There are sill 1641 patients across the PCT/CCG with raised cholesterol or LDL who are yet to be assessed against the full Simon Broome criteria. Figures up 14/1/12. The software to run the audits was licensed from BMJ Informatica at a cost of 60,000 per annum but this is one of a whole range of audits we're running (and developing) others include AF, COPD, Heart Failure, CKD, Hypertension, Lithium monitoring, Tobacco,Alcohol, BMI, Learning disabilities, prevalence of conditions listed in the NHS Outcomes Framework for 12-13, audits to support screening programmes and niche audits to support better management of rare conditions that because of their rarity are both unlikely to be prioritised by NICE or included in QOF. Almost all these audits include clinical prompts to remind clinicians what to consider and making every consultation count for more.

Key learning points

Utilising systematic analysis of GP clinical databases allows us to identify patients who may have Familial Hypercholesterolaemia or possible Familial Hypercholesterolaemia across a PCT/CCG. Practices can produce lists of these patients but clinicians also get prompted when they see the patient to consider the diagnosis if appropriate, inform relatives if appropriate and monitor management. Data extraction systems only tell you what you should have done but didn't. The addition of prompts helps clinicians do the right thing at the right time first time. This approach empowers clinicians to work smarter not harder for better outcomes. Raised cholesterol is routinely managed in primary care for most patients. Genetic testing currently adds no benefit as absence of an abnormality does not exclude the diagnosis. Most PCTs do not fund this test. Diagnosing and managing patients in primary care is cheaper and using this approach more effective.

Contact Details

Name:Peter Green
Job Title:Medical Director
Organisation:NHS Kent and Medway
Address:50 Pembroke Court, Chatham Maritime
Postcode:ME4 4EL
Phone:01634 335020


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This page was last updated: 15 January 2012

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Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.