Care of youth with lipid disorders: A brief provider survey

Abstract

Background/Synopsis

Although CVD-related symptoms and events rarely occur in childhood, risk factors are present at an early age. Lifelong exposure to elevated cholesterol, particularly in those with familial hypercholesterolemia, significantly increases risk of premature CVD-related events such as MI and CVA at a later age. Early identification and treatment of all risk factors, including elevated cholesterol, have proven to be effective in reducing morbidity and mortality. In the past 30 years, there has been increasing interest in early intervention, as atherosclerosis begins in childhood. Professional organizations have increasingly begun to focus on risk in the pediatric population. As a result, there is a need for experienced pediatric healthcare professionals with unique knowledge, as well as dedicated lipid clinics, to evaluate and properly treat youth (<18 years-of-age) with lipid disorders.

Objective/Purpose

The aim of this project was to describe the number and scope of services in the U.S. and Canada available to youth (< 18 years-of-age) with lipid disorders.

Methods

We designed an internet survey (Qualtrics®) to collect clinic-specific data, including age range of patients, percentage of time spent in care of children with lipid disorders and available clinical resources. Additional data included years of experience and type of practice. A list of over 150 lipidologists and clinical staff, representing a variety of pediatric and combined adult and pediatric clinics, obtained from the Pediatric Atherosclerosis Prevention and Lipidology (PeDAL) working group, was used as the target population. Completion of the survey was voluntary and all responses anonymous.

Results

There were 39 MD/DO respondents. Almost 80% of all respondents practice in an academic setting. Additional staff include a dietitian/nutritionist (81.4%), pediatric nurse (65%), and advanced practice practitioners (NP/PA) (37.2%). For non-English speaking families 51% of respondents had access to an in-person translator and 74.4% reported having a virtual translator service with audio and visual capabilities. A wide range of educational materials are available to patients/families ranging from handouts, internet links and pamphlets/booklets. In addition to English, educational materials are available in additional languages, such as Spanish (58.1%), Arabic (4.6%) and Chinese (2.3%).

Conclusions

This brief internet survey provides insight into the scope of services offered to children and adolescents with lipid disorders. Further studies should focus on best practices in pediatric lipid clinics to help inform clinical care and improve outcomes for this vulnerable population.