C-B5-03: Linking Parent and Child Medical Records to Identify Youth at Risk for Familial Hypercholesterolemia

  • November 2011,
  • 154.1;
  • DOI: https://doi.org/10.3121/cmr.2011.1020.c-b5-03

Abstract

Background Despite consistent recommendations in numerous guidelines sponsored by professional societies, screening youth for familial hypercholesterolemia (FH) and/or those with a family history of premature cardiovascular disease (CVD) identifies only a small percentage of high-risk youth. By linking parent and child data in the virtual data warehouse, we can assess current screening practices, factors that impact screening practices and ultimately strategies aimed at improving childhood screening.

Aims the aim of this study is to compare cholesterol testing and screening rates in youth who have at least one parent covered under the same health plan with a history of CVD defined as a history of myocardial infarction, percutaneous coronary artery intervention (PCI) or coronary artery bypass surgery (CABG) and/or a parent with FH established by ICD-9 diagnoses or an abnormal cholesterol level.

Methods A cohort of youth who were 2–26 years of age anytime between service dates inclusive of 01/01/2001 and 12/31/2009 and who were covered as insured members under their parents’ health plans within the Scott & White HMO were identified including a subset with any ICD-9 diagnosis code associated with hyperlipidemia. Parent-child linkagages were created using a subscriber_id relationship code and relationship description. The parental cohort with CVD was identified from the CVRN Surveillance study as well as parents who have FH defined as an LDL-C of > 215 mg/dl or a total cholesterol > 300 mg/dl.

Results We found that adherence to guidelines for cholesterol screening of youth at a higher risk for premature CHD is no greater than screening rates for children with a lower risk who do not have an affected parent. Moreover, a family history of CHD and hypercholesterolemia is rarely documented in a dependent’s medical record.

Conclusions Cost-effective approaches to screening for FH in the pediatric population rely on a parental history of CVD and/or FH. However, this approach does not identify the majority of youth at risk for premature CVD. Universal screening of youth may be warranted.

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