A study protocol for developing an implementation strategy bundle to enhance adoption of pediatric familial hypercholesterolemia screening

Abstract

Familial hypercholesterolemia (FH) is the most common primary lipid disorder of childhood, affecting 1 in 250–350 children. Universal childhood cholesterol screening is an opportunity for earlier and more effective FH diagnosis and treatment that is superior to adult screening in terms of preventing later life atherosclerotic cardiovascular disease (ASCVD) yet is poorly implemented. Little is known about key stakeholder factors that influence implementation of universal pediatric cholesterol screening to identify FH. The planned study will identify patient/parent, healthcare provider and health leader preferences, barriers, and facilitators to inform development of FH screening implementation strategies. Guided by the Practical, Robust, Implementation, and Sustainability Model (PRISM) and implementation mapping, we will utilize a mixed methods approach to adapt a previously used survey that will be distributed to U.S. pediatric providers ( n ~ 1,000) to quantify provider-level preferences and implementation determinants of FH screening. Provider and organizational leader semi-structured interviews ( n ~ 50) will be used to elucidate survey data. Qualitative interviews ( n ~ 40) with children with FH and parents of children with FH will elicit patient and family preferences and determinants of FH screening implementation. These results will inform design of a discrete choice experiment to rank preferences and implementation determinants important to patients and parents. Finally, we will develop strategies to address barriers at multiple levels to enhance implementation of pediatric FH screening. The planned study will provide a comprehensive understanding of previously unexplored patient, parent, healthcare provider, and organizational leader perspectives on preferences, barriers and facilitators for FH screening. Multi-level, evidence-based implementation strategies, informed by theory and codesigned with stakeholders, will be developed and will enhance the likelihood of pediatric FH screening uptake across diverse clinical settings.