Background: Screening for familial hypercholesterolaemia (FH) through family tracing of relatives is cost-effective, but access to the index patient through specialist lipid clinics is a determinant of the programme's success. This paper reports on numbers of FH patients and on specialist lipid clinic provision in the United Kingdom.
Results: One hundred and forty-four clinics provide specialist lipid services. Over 20 per cent of clinics do not employ a nurse and 64 per cent employ only one doctor. Two thirds treat children. Thirty-four clinics (24 per cent) have computerized records, 58 plan to and 66 clinics were unable to estimate FH numbers. Data from the responding clinics identified 4665 'definite' and 6024 'probable' FH cases. By extrapolation, we estimate there are 19 794 FH patients treated in specialist centres, 17 per cent of the predicted number.
Comment: Specialist lipid clinic provision is patchy. Less than 10 per cent of the predicted FH patients in the UK are recorded on computerized databases limiting implementation of cascade testing. Substantial investment in the infrastructure of specialist lipid clinics is needed.