Quality statement 8: Annual review
People with familial hypercholesterolaemia (FH) are offered a structured review at least annually.
Regular structured review enables treatment to be monitored and adjusted to achieve the recommended LDL‑C concentration. It also enables monitoring for the possible development of symptoms and signs of coronary heart disease and optimising management. Records can be maintained of affected family members and information can be tailored to individual circumstances. Progress with cascade testing of at‑risk relatives can be monitored.
The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured, and can be adapted and used flexibly.
Evidence of local arrangements to ensure that people with FH are offered a structured review at least annually.
Data source: Local data collection.
Proportion of people with FH who receive a structured review at least annually.
Numerator – The number of people in the denominator who had a structured review within 12 months of the last review or diagnosis.
Denominator – The number of people with FH.
Data source: Local data collection using a dedicated database.
Service providers ensure that systems are in place for people with FH to be offered a structured review at least annually.
Healthcare practitioners offer people with FH a structured review at least annually.
Commissioners ensure that they commission services that offer a structured review at least annually to people with FH.
People with FH are offered a detailed review of their condition at least once a year.
Familial hypercholesterolaemia: identification and management. NICE guideline CG71 (2008, updated 2019), recommendations 188.8.131.52, 184.108.40.206, 220.127.116.11, and 18.104.22.168 to 22.214.171.124
Structured review should include all the following components if appropriate:
recording progress of cascade testing among relatives
updating the family pedigree and noting changes in the coronary heart disease status of relatives
assessing any symptoms of coronary heart disease
assessing smoking status, and offering advice and information on smoking cessation services
measuring fasting lipid profile
discussing adherence to treatment, and possible side effects of treatment the person may be experiencing
discussing any changes in lifestyle or lipid‑modifying drug treatment that may be needed to achieve the recommended LDL‑C concentration
giving advice on contraception and pregnancy (to women and girls only)
monitoring growth and pubertal development (in children and young people only).