Background and Aims

Familial hypercholesterolemia (FH) is a genetic disorder with high low-density lipoprotein cholesterol and high risk of atherosclerotic cardiovascular disease. Early initiation of statin treatment is key to reduce later risk of disease. The transition period from adolescence to young adult has been shown to be a particular vulnerable period for FH children in terms of adherence to treatment.

Aim: Investigate compliance to statin treatment among children and young adults with FH.

Methods

Method: Retrospective cohort study collecting data from patient medical records at the Lipid Clinic in Oslo, Norway

Results

Results: 274 children with FH; 11 (8-14) years at first visit and 22 (18-27) years at follow-up (median; 25-75 percentile). 227 children were initiated on statin during a 10-year follow-up period. Of these, 16 (7.0%) reported irregular use of statins at last visit, whereas 39 (17.2%) reported not using their prescribed statin medication at all. Reasons for not using prescribed statin medication among the non-compliant (n=39) were; lack of motivation/skepticism about using statins [10 (25.6%)], adverse effects [9 (23.1%)], running out of prescription [5 (12.8%)], forgetting medication [4 (10.2%)], economical issues [1 (2.6%)], and unknown reason [10 (25.6 %)]. Elevated CK and ALT levels were registered in 8.8% and 2.2% of the statin-treated children, respectively, but was never a reason for permanently withdrawal of statins.

Conclusions

Conclusion: Almost 25% of the children with FH in the current study have treatment adherence issues. Strategies to increase adherence to treatment among children and young adults with FH should be a priority.