Abstract 078: Mid- To Long- Term Follow-up Care Insufficiencies From A Cross-sectional School- Based Cholesterol Screening Program

Abstract

Introduction: The CARDIAC project surveyed cardiometabolic risk and risk for familial hypercholesterolemia (FH) through a school-based program, demonstrating the importance of universal blood cholesterol screening in children. At most, 10% of FH is diagnosed in the United States. Hypothesis: We hypothesize a disconnect between identification of risk factors and the follow-up care received by those children and young adults. Methods: Between 1998 and 2016, 60,404 5th grade children had their LDL-C levels assessed through venipuncture lipid panels. Of the 638 children who had an LDL-C ≥ 160mg/dl, indicative of probable FH, 395 were identified through EPIC EHR, phone calls, and mail surveys. WVU IRB approved verbal consent by participants. Information on their current status was obtained including medical care for their cholesterol, lipid-lowering medications (LLM), other medications, and family history of cardiac-related events. Results: Out of the 395 children identified, 174 were male and 221 were female. We had follow-up lipid panels for 58. Eight participants on a LLM had a follow-up LDL-C that was 57.5 +/- 50.1 mg/dl lower than the 5th grade level. Fifty subjects not on a LLM had an LDL-C that was 27.2 +//- 48.0 mg/dl lower than baseline. No follow-up LDL-C data was available on 33 participants who received a LLM. While only 41 children had ever taken a LLM, 56 participants were taking oral contraceptive, and 63 a psychotropic medicine. Only 1 participant was enrolled in the FH Registry. No subject was found with major adverse coronary event. Conclusion: Follow-up after screening demonstrated improved lipid levels in several subjects without known medication. Many subjects were receiving oral contraceptive agents and psychotropic medicines associated with dyslipidemia, usually without follow-up lipid panels. Roughly one-third of participants had unknown mid-term course. Epic EHR for WVU Health System found 393 subjects. The inability to document ongoing medical care in addition to demonstrated lack of care received by those who had an LDL greater than 160mg/dl shows that there is insufficient follow-up care for young people with probable FH. In conclusion, the data points to areas to improve, including better education for patients with this cardiometabolic risk factor. Education of health care professionals, telemedicine, patient-driven advocacy groups, EHRs that cover large catchments, and patient communication portals promise to better focus ongoing care for persons with abnormal lipid profiles.