Familial Hypercholesterolaemia Pilot Project

Familial Hypercholesterolaemia (FH) is part of the AHSN NENC Cardiovascular Disease (CVD) Prevention Programme and was originally piloted in the North East and North Cumbria by the AHSN NENC.

This successful pilot project identified an opportunity to improve FH diagnostic rates to substantially reduce the incidence of CVD and premature mortality associated with FH and, as a result this is now part of a nationally mandated FH & Lipid optimisation programme across all 15 AHSNs.

An article about the success of the pilot project recently featured in the Atherosclerosis Journal

Key Results

Project Outcomes

  • Development of system searches within GP systems (CDRC Precision) to efficiently identify patients who may have FH
  • Increased FH detection rates in participating practices (up to 25%)
  • 24 index patients were identified across a footprint of 9 GP practices, leading to identification of 78 first degree relatives and 166 2nd degree relatives. An additional 80 patients are predicted to be FH positive following cascade testing of these 1st and 2nd degree family members
  • Using CDRC Precision delivered a 42% hit rate of those patients identified for testing
  • 100% of patients attending the nurse led clinic felt the service met their expectations and the level of education provided was excellent
  • Strengthened relationships between Primary & Secondary care
  • Development of revised patient pathway to ensure appropriate and efficient referral
  • Identified opportunities for service redesign
  • Redesigning roles in appropriate parts of the pathway
  • Delivered a flexible model of care
  • Roll out of education & awareness around FH & lipid management

Patient Feedback

Patient Feedback was used to continually optimise the service and patients rated the service as excellent or very good.

“Very informative and expertly delivered – has made me aware of how important my diet is in lowering my cholesterol”

“The nurse was very good at explaining what the project was for and I was happy to participate.”

Further information about the project can be found by downloading the project case study below:

FH Pilot Project Case Study

For more information about the AHSN NENC FH Pilot Project contact [email protected]