Lipid disorders: FH assessment and diagnosis (historical readings)
Indicator
The percentage of patients with a total cholesterol reading greater than 7.5 mmol/litre when aged 29 years or under, or greater than 9.0 mmol/litre when aged 30 years or over, who have been:
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diagnosed with secondary hyperlipidaemia or
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clinically assessed for familial hypercholesterolaemia or
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referred for assessment for familial hypercholesterolaemia or
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genetically diagnosed with familial hypercholesterolaemia.
Indicator type
General practice indicator suitable for use in the Quality and Outcomes Framework.
If used in practice, consideration should be given during the early periods of implementation to the potential increased workload for practices to recall patients with historical high cholesterol readings and increased referrals to specialist services.
As currently constructed, the indicator denominator will include some of the same patients for the same high reading each time data is extracted, with potentially no need for action in the current reporting period. The indicator should therefore be reviewed once diagnosis rates have improved.
This document does not represent formal NICE guidance. For a full list of NICE indicators, see our menu of indicators.
To find out how to use indicators and how we develop them, see our NICE indicator process guide.
Rationale
Familial hypercholesterolaemia (FH) is a genetic disorder that causes a high cholesterol level and increases the likelihood of coronary artery disease, heart attacks and sudden cardiac death. Current diagnosis rates are below expected prevalence and NICE guidance recommends systematic searching of primary care records for people with a total cholesterol reading greater than 7.5 mmol/litre when aged 29 years or under, or greater than 9.0 mmol/litre when aged 30 years or over, as these are the people who are at highest risk of FH. Detection and genetic diagnosis can lead to provision of appropriate lipid-lowering treatment to lower risks of cardiovascular disease and improve outcomes. Fasting cholesterol tests should ideally be used but the indicator will search for the earliest high total cholesterol reading.
Source guidance
Familial hypercholesterolemia. NICE guideline CG71 (2008 updated 2019), recommendations 1.1.2, 1.1.5, 1.1.6 and 1.1.8
Specification
Numerator: The number in the denominator who have been:
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diagnosed with secondary hyperlipidaemia after the earliest high cholesterol reading; or
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clinically assessed for familial hypercholesterolaemia at any time; or
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referred for assessment for familial hypercholesterolaemia at any time; or
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genetically diagnosed with familial hypercholesterolaemia at any time.
Denominator: The number of patients with a total cholesterol reading greater than 7.5 mmol/litre when aged 29 years or under, or a total cholesterol reading greater than 9.0 mmol/litre when aged 30 years or over.
The construction searches for the earliest total cholesterol reading that would indicate a risk of FH as per NICE guidance. It does not include a specific time period for the reading.
Calculation: Numerator divided by the denominator, multiplied by 100.
Exclusions: None
Personalised care adjustments or exception reporting should be considered to account for situations where the patient is receiving palliative care, declines assessment, or if further assessment is not appropriate.
Expected population size: IIF CVD-04 data for 2022/23 show that 0.6% of people in England would have high cholesterol levels in the at-risk range for familial hypercholesterolemia: 62 patients for an average practice with 10,000 patients. To be suitable for use in QOF, there should be more than 20 patients eligible for inclusion in the denominator, per average practice with 10,000 patients, prior to application of personalised care adjustments.
ISBN: 978-1-4731-5950-1