NIHR DC Discover

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NIHR Signal Reminders help GPs to find and manage inherited cholesterol disorders

Published on 11 September 2018

doi: 10.3310/signal-000643

GPs and practice nurses assess more adults with inherited raised cholesterol (familial hypercholesterolaemia) when prompted by reminders. More patients have repeat cholesterol tests and assessments for heart disease, in line with NICE guidelines.

This NIHR-funded study used electronic health records from six GP practices to identify patients with total cholesterol greater than 7.5mmol/l. Reminder messages appeared when their records were opened during consultations and prompted GPs to carry out further assessments.

People with familial hypercholesterolaemia are at high risk of cardiovascular disease and their health outcomes improve when this is diagnosed and treated. This intervention was simple but effective in increasing assessments for patients at risk, improving their chances of diagnosis and treatment.

The study wasn’t a randomised controlled trial, so the results may have been influenced by other external factors, rather than by the intervention itself.

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Why was this study needed?

Familial hypercholesterolaemia (FH) is a high cholesterol condition that runs in families. It is an inherited condition, rather than a result of lifestyle choices. Familial hypercholesterolaemia is thought to affect about 1 in 500 people, or around 120,000 people in the UK, although most of these people are undiagnosed and untreated. Without treatment, people with FH are much more likely to develop heart disease earlier than most people. When untreated, more than 50% of men with FH develop coronary heart disease by the age of 50, and about 30% of women by the age of 60. 

A NICE guideline on FH provides recommendations for identifying and managing the condition. However, people with raised cholesterol levels are often not recognised as potentially having FH. This study aimed to investigate whether a proactive approach to identifying possible FH in primary care improves best practice in line with NICE guidance.

What did this study do?

This pre- and post-intervention study recruited six general practices in Nottingham. GPs and practice nurses were given an hour-long educational session on identifying and assessing FH.

Electronic health records of 118 adults with a recorded total cholesterol level greater than 7.5mmol/l and no confirmed diagnosis of FH were then tagged.  Whenever their records were accessed during a consultation, the GP or nurse got a reminder message, prompting them to assess for FH. Patients who hadn’t been seen within four months were sent a letter asking them to have a lipid (blood fat) test and complete a family history questionnaire.

After the intervention, the practices were assessed for compliance with NICE guideline recommendations.

Though the study was relatively small, not randomised, and only took place over six months, the results are promising.

What did it find?

  • Thirty-two out of 118 patients (27.1%) met NICE-recommended diagnostic criteria for possible FH (see definitions tab). Two patients were confirmed to have definite FH.
  • In the pre-intervention period, before GPs and practice nurses were reminded to assess for FH, cholesterol testing was repeated in only 12 of 118 patients (10.2%), and any family history of heart disease assessed in only seven patients (5.9%). Statins were prescribed for only 18 patients (15.3%).
  • After the intervention, repeat cholesterol tests were carried out for 101 of 118 patients (85.6%), and any family history of heart disease was assessed in 49 patients (41.5%).  Statins were prescribed for 23 of the 32 patients diagnosed with possible FH, an absolute difference of 18.8% (95% confidence interval 8.9 to 35.3%).

What does current guidance say on this issue?

NICE published a guideline on the identification and management of familial hypercholesterolaemia in 2008. This was updated in 2017. It recommends that FH should be suspected as a possibility in adults with a total cholesterol level greater than 7.5mmol/l and/or a personal or family history of premature heart disease. Primary care records should be systematically searched for people who are at highest risk of FH. Simon-Broome or Dutch Lipid Clinic Network criteria should be used to make a clinical diagnosis of FH in primary care settings, with repeat cholesterol tests. Life-long statins should be offered to all adults with FH.

What are the implications?

This study suggests that a simple intervention in primary care can improve the identification of possible FH among patients with high cholesterol. It increased the number of patients who were treated in line with best practice as defined by NICE. 

There are some potential barriers to implementing the intervention more widely, such as training staff, and the time taken to identify appropriate patients from electronic health records. If it were to be implemented across primary care, it could lead to a substantial improvement in recognition of possible FH, leading to improved health outcomes for these patients.

Citation and Funding

Weng S, Kai J, Tranter J, Leonardi-Bee J, Qureshi N. Improving identification and management of familial hypercholesterolaemia in primary care: pre- and post-intervention study. Atherosclerosis. 2018;274:54-60. 

This project was funded by the National Institute for Health Research School of Primary Care Research programme (project number NIHR-SPCR FR2-95).

Bibliography

NHS website. High cholesterol – causes. London: Department of Health; 2015.

NICE. Familial hypercholesterolaemia: identification and management. CG71. London: National Institute for Health and Care Excellence; updated 2017.

Why was this study needed?

Familial hypercholesterolaemia (FH) is a high cholesterol condition that runs in families. It is an inherited condition, rather than a result of lifestyle choices. Familial hypercholesterolaemia is thought to affect about 1 in 500 people, or around 120,000 people in the UK, although most of these people are undiagnosed and untreated. Without treatment, people with FH are much more likely to develop heart disease earlier than most people. When untreated, more than 50% of men with FH develop coronary heart disease by the age of 50, and about 30% of women by the age of 60. 

A NICE guideline on FH provides recommendations for identifying and managing the condition. However, people with raised cholesterol levels are often not recognised as potentially having FH. This study aimed to investigate whether a proactive approach to identifying possible FH in primary care improves best practice in line with NICE guidance.

What did this study do?

This pre- and post-intervention study recruited six general practices in Nottingham. GPs and practice nurses were given an hour-long educational session on identifying and assessing FH.

Electronic health records of 118 adults with a recorded total cholesterol level greater than 7.5mmol/l and no confirmed diagnosis of FH were then tagged.  Whenever their records were accessed during a consultation, the GP or nurse got a reminder message, prompting them to assess for FH. Patients who hadn’t been seen within four months were sent a letter asking them to have a lipid (blood fat) test and complete a family history questionnaire.

After the intervention, the practices were assessed for compliance with NICE guideline recommendations.

Though the study was relatively small, not randomised, and only took place over six months, the results are promising.

What did it find?

  • Thirty-two out of 118 patients (27.1%) met NICE-recommended diagnostic criteria for possible FH (see definitions tab). Two patients were confirmed to have definite FH.
  • In the pre-intervention period, before GPs and practice nurses were reminded to assess for FH, cholesterol testing was repeated in only 12 of 118 patients (10.2%), and any family history of heart disease assessed in only seven patients (5.9%). Statins were prescribed for only 18 patients (15.3%).
  • After the intervention, repeat cholesterol tests were carried out for 101 of 118 patients (85.6%), and any family history of heart disease was assessed in 49 patients (41.5%).  Statins were prescribed for 23 of the 32 patients diagnosed with possible FH, an absolute difference of 18.8% (95% confidence interval 8.9 to 35.3%).

What does current guidance say on this issue?

NICE published a guideline on the identification and management of familial hypercholesterolaemia in 2008. This was updated in 2017. It recommends that FH should be suspected as a possibility in adults with a total cholesterol level greater than 7.5mmol/l and/or a personal or family history of premature heart disease. Primary care records should be systematically searched for people who are at highest risk of FH. Simon-Broome or Dutch Lipid Clinic Network criteria should be used to make a clinical diagnosis of FH in primary care settings, with repeat cholesterol tests. Life-long statins should be offered to all adults with FH.

What are the implications?

This study suggests that a simple intervention in primary care can improve the identification of possible FH among patients with high cholesterol. It increased the number of patients who were treated in line with best practice as defined by NICE. 

There are some potential barriers to implementing the intervention more widely, such as training staff, and the time taken to identify appropriate patients from electronic health records. If it were to be implemented across primary care, it could lead to a substantial improvement in recognition of possible FH, leading to improved health outcomes for these patients.

Citation and Funding

Weng S, Kai J, Tranter J, Leonardi-Bee J, Qureshi N. Improving identification and management of familial hypercholesterolaemia in primary care: pre- and post-intervention study. Atherosclerosis. 2018;274:54-60. 

This project was funded by the National Institute for Health Research School of Primary Care Research programme (project number NIHR-SPCR FR2-95).

Bibliography

NHS website. High cholesterol – causes. London: Department of Health; 2015.

NICE. Familial hypercholesterolaemia: identification and management. CG71. London: National Institute for Health and Care Excellence; updated 2017.

Improving identification and management of familial hypercholesterolaemia in primary care: Pre- and post-intervention study

Published on 30 April 2018

S Weng, J Kai, J Tranter, J Leonardi-Beeb, N Qureshi

Atherosclerosis , 2018

Background and aims Familial hypercholesterolaemia (FH) is a major cause of premature heart disease but remains unrecognised in most patients. This study investigated if a systematic primary care-based approach to identify and manage possible FH improves recommended best clinical practice. Methods Pre- and post-intervention study in six UK general practices (population 45,033), which invited patients with total cholesterol >7.5 mmol/L to be assessed for possible FH. Compliance with national guideline recommendations to identify and manage possible FH (repeat cholesterol; assess family history of heart disease; identify secondary causes and clinical features; reduce total & LDL-cholesterol; statin prescribing; lifestyle advice) was assessed by calculating the absolute difference in measures of care pre- and six months post-intervention. Results The intervention improved best clinical practice in 118 patients consenting to assessment (of 831 eligible patients): repeat cholesterol test (+75.4%, 95% CI 66.9–82.3); family history of heart disease assessed (+35.6%, 95% CI 27.0–44.2); diagnosis of secondary causes (+7.7%, 95% CI 4.1–13.9), examining clinical features (+6.0%, 95% CI 2.9–11.7). For 32 patients diagnosed with possible FH using Simon-Broome criteria, statin prescription significantly improved (18.8%, 95% CI 8.9–35.3), with non-significant mean reductions in cholesterol post-intervention (total: −0.16 mmol/L, 95% CI -0.78-0.46; LDL: −0.12 mmol/L, 95% CI -0.81-0.57). Conclusions Within six months, this simple primary care intervention improved both identification and management of patients with possible FH, in line with national evidence-based guidelines. Replicating and sustaining this approach across the country could lead to substantial improvement in health outcomes for these individuals with very high cardiovascular risk.

NICE recommends using Simon-Broome or Dutch Lipid Clinic Network criteria for diagnosing familial hypercholesterolaemia (FH) in primary care settings.

Simon-Broome criteria for adults use different measures of total and low-density lipoprotein cholesterol (LDL-C), as well as clinical signs and family history, to assess either definite or possible FH. Full details can be found at the link above.

Dutch Lipid Clinic Network criteria is another method of assessing whether a person has FH. It is based on personal and family medical history, clinical signs, LDL‑C concentration and DNA testing. A score is attributed to each component; the higher the score, the higher the likelihood of the person having FH.

Expert commentary

Familial hypercholesterolaemia, a condition in which there is a genetic predisposition towards a raised blood cholesterol, is common but is often undiagnosed. People with the condition who are not identified and treated early in life are at much higher risk of heart disease and other cardiovascular problems than the general population.

In this study, Stephen Weng and colleagues showed how a simple primary care-based intervention improved both the identification and management of patients with possible familial hypercholesterolaemia. If their approach was repeated across England, this could potentially lead to major health benefits for patients with familial hypercholesterolaemia as well as for the NHS.

Azeem Majeed, Professor of Primary Care and Head of the Department of Primary Care & Public Health, Imperial College London