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other·cardiology, internal medicine, family medicine, public health, research methods·PMC10175779

Designing implementation strategies to improve identification, cascade testing, and management of families with familial hypercholesterolemia: An intervention mapping approach

Frontiers in Health Services · 16 authors, 10 centres

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TL;DR

This study used a systematic intervention mapping process, combining a literature review with interviews and surveys of individuals with familial hypercholesterolemia (FH), to develop evidence-based, multilevel implementation strategies aimed at improving FH identification, cascade testing, and management.

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The authors employed intervention mapping to design strategies for improving FH care. They first conducted a needs assessment via a scoping review and a mixed-methods study involving dyadic interviews (22 individuals) and online surveys (98 respondents) with individuals and families with FH. Based on these barriers, a package of implementation strategies mapped to program outcomes was created, including educational programs, multidisciplinary care teams, and policy changes. The paper highlights an example of strategy deployment through the NHLBI-funded CARE-FH study focused on FH identification in primary care. Limitations include the context-specific nature of the developed strategies and the focus on implementation-phase strategies over pre-implementation ones. The work provides a replicable framework for others to develop tailored strategies to address FH care gaps.

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other

SPECIALTY

cardiology

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AI pipeline

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ORIGINAL PAPER

PMC10175779

Designing implementation strategies to improve identification, cascade testing, and management of families with familial hypercholesterolemia: An intervention mapping approach

Frontiers in Health Services

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ABSTRACT

Introduction Familial hypercholesterolemia (FH) is a common inherited cholesterol disorder that, without early intervention, leads to premature cardiovascular disease. Multilevel strategies that target all components of FH care including identification, cascade testing, and management are needed to address gaps that exist in FH care. We utilized intervention mapping, a systematic implementation science approach, to identify and match strategies to existing barriers and develop programs to improve FH care. Methods Data were collected utilizing two methods: a scoping review of published literature, related to any component of FH care, and a parallel mixed method study using interviews and surveys. The scientific literature was searched using key words including “barriers” or “facilitators” and “familial hypercholesterolemia” from inception to December 1, 2021. The parallel mixed method study recruited individuals and families with FH to participate in either dyadic interviews ( N = 11 dyads/22 individuals) or online surveys ( N = 98 respondents). Data generated from the scoping review, dyadic interviews, and online surveys were used in the 6-step intervention mapping process. Steps 1–3 included a needs assessment, development of program outcomes and creation of evidence-based implementation strategies. Steps 4–6 included program development, implementation, and evaluation of implementation strategies. Results In steps 1–3, a needs assessment found barriers to FH care included underdiagnosis of the condition which led to suboptimal management due to a myriad of determinants including knowledge gaps, negative attitudes, and risk misperceptions by individuals with FH and clinicians. Literature review highlighted barriers to FH care at the health system level, notably the relative lack of genetic testing resources and infrastructure needed to support FH diagnosis and treatment. Examples of strategies to overcome identified barriers included development of multidisciplinary care teams and educational programs. In steps 4–6, an NHLBI-funded study, the Collaborative Approach to Reach Everyone with FH (CARE-FH), deployed strategies that focused on improving identification of FH in primary care settings. The CARE-FH study is used as an example to describe program development, implementation, and evaluation techniques of implementation strategies. Conclusion The development and deployment of evidence-based implementation strategies that address barriers to FH care are important next steps to improve identification, cascade testing, and management.

CITATION EXPORT

Laney K. Jones, Evan M. Calvo, Gemme Campbell-Salome et al.. Designing implementation strategies to improve identification, cascade testing, and management of families with familial hypercholesterolemia: An intervention mapping approach. Frontiers in Health Services. (2023). https://doi.org/10.3389/frhs.2023.1104311

AUTHORS

16 · 10 CENTRES

Laney K. Jones, Evan M. Calvo, Gemme Campbell-Salome, Nicole L. Walters, Andrew Brangan, Gabriela Rodriguez, Catherine D. Ahmed, Kelly M. Morgan, Samuel S. Gidding, Marc S. Williams, Ross C. Brownson, Terry L. Seaton, Anne C. Goldberg, Mary P. McGowan, Alanna K. Rahm, Amy C. Sturm

1Department of Genomic Health, Research Institute, Geisinger, Danville, PA, United States
2Heart and Vascular Institute, Geisinger, Danville, PA, United States
3Geisinger Commonwealth School of Medicine, Geisinger College of Health Sciences, Geisinger, Scranton, PA, United States
4Department of Population Health Sciences, Research Institute, Geisinger, Danville, PA, United States
5Family Heart Foundation, Pasadena, CA, United States
6Prevention Research Center in St. Louis, Brown School, Washington University in St. Louis, St. Louis, MO, United States
7Department of Surgery (Division of Public Health Sciences), Alvin J. Siteman Cancer Center, Washington University School of Medicine, Washington University in St. Louis, St. Louis, MO, United States
8University of Health Sciences and Pharmacy in St. Louis, St. Louis, MO, United States
9Division of Endocrinology, Metabolism and Lipid Research, John T. Milliken Department of Internal Medicine, Washington University School of Medicine in St. Louis, Washington University in St. Louis, St. Louis, MO, United States
1023andMe, Sunnyvale, CA, United States