Prevalence and Characteristics of Patients With Primary Severe Hypercholesterolemia in a Multidisciplinary Healthcare System.

Severe hypercholesterolemia (SH) includes individuals with LDL-C ≥ 190 mg/dl, regardless of cause. These individuals have a fivefold increased long-term risk for coronary artery disease. Although systematic SH screening can trigger early treatment, current treatment guidelines may not be fully implemented or followed by patients. To further understand this treatment gap, we used electronic health record data to retrospectively assess SH prevalence, characteristics, and treatment in a midwest US healthcare system, between 2009 and 2020. Comorbidities, tobacco exposure, and prescribed lipid-lowering therapies were assessed. Statistical analyses were conducted to identify differences between individuals with primary SH (LDL-C ≥ 190 mg/dl, group 1) and those without primary SH (LDL-C < 190 mg/dl, group 2). Of 265,220 records analyzed, 7.4% met the definition for primary SH. These group 1 cases had more comorbidities than group 2 cases, including premature coronary artery disease (5.8% vs 2.7%). Results showed most individuals in group 1 were treated by primary care providers (43.2% to 45.7%), than by specialty providers (2.5% to 3.3%), and these primary care providers prescribed mainly moderate-intensity statins. Seventy-seven percent of group 1 individuals were treated with a statin, 27% were treated with a high-intensity statin, and 4% were treated with ezetimibe. Fewer young patients (< 40 years) were treated with statins (50% to 58.3%) than older patients (74.0% to 76.3%). Although use of general statins, high-intensity statins, and ezetimibe was higher in individuals with SH than those without SH, treatment remains below guideline recommendations, especially in younger individuals.