Quality statement 8: Annual review

Quality statement

People with familial hypercholesterolaemia (FH) are offered a structured review at least annually.

Rationale

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.

Quality measures

Structure

Evidence of local arrangements to ensure that people with FH are offered a structured review at least annually.

Data source: Local data collection.

Process

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.

What the quality statement means for service providers, healthcare practitioners, and commissioners

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.

What the quality statement means for patients, service users and carers

People with FH are offered a detailed review of their condition at least once a year.

Source guidance

Familial hypercholesterolaemia: identification and management (NICE guideline CG71), recommendations 1.3.1.27, 1.4.2.1, 1.4.3.2, 1.5.1.1, 1.5.1.3, 1.5.1.4 and 1.5.1.5

Definitions of terms used in this quality statement

Familial hypercholesterolaemia (FH)

FH relates to heterozygous FH only.

People with FH

People should have a diagnosis of FH made by a specialist with expertise in FH.

Structured review

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).