Collaborative Approach to Reach Everyone with Familial Hypercholesterolemia: CARE-FH Protocol

Jones, Laney K.; Williams, Marc S.; Ladd, Ilene; Cawley, Dylan; Ge, Shengfang; Hao, Jing; Hassen, Dina; Hu, Yirui; Kirchner, H. Lester; Kobylinski, Maria; Lesko, Michael; Nelson, Matthew C.; Rahm, Alanna Kulchak; Rolston, David D.K.; Romagnoli, Katrina M.; Schubert, Tyler J; Shuey, Timothy C.; Sturm, Amy C.; Gidding, Samuel S.

doi:10.3390/jpm12040606

Cited by 7 publications

(5 citation statements)

References 38 publications

(45 reference statements)

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“…Conceptual model of implementation research framework tailored to the CARE-FH (Collaborative Approach to Reach Everyone with Familial Hypercholesterolemia) protocol. Source: Reproduced with permission Jones et al [30 ▪▪ ] under the CC BY license.…”

Section: Implementation Science As a Solution To Improve Carementioning

confidence: 99%

“…Jones et al [30 ▪▪ ] utilizes the Conceptual Model of Implementation Research in their type III effectiveness-implementation stepped-wedge design trial to test the familial hypercholesterolemia diagnostic evaluation rates among primary care physicians who receive an implementation strategy package compared with those who do not (Fig. 2).…”

Section: Implementation Science As a Solution To Improve Carementioning

confidence: 99%

“…In addition, two protocols for clinical trials (NCT04450914 and NCT05284513) have been published that deploy implementation theories, models, and frameworks to improve translation of care into practice [29 ▪▪ ,30 ▪▪ ]. Ridgeway et al [29 ▪▪ ] utilizes the Consolidated Framework for Implementation Research, Normalized Process Theory, and RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance framework) in their mixed method, hybrid type III stepped wedge cluster randomized study to integrate a shared decision-making decision tool, called Cardiovascular Prevention Choice, into routine care for cardiovascular disease at three US health systems (Fig.…”

Section: Implementation Science As a Solution To Improve Carementioning

confidence: 99%

See 2 more Smart Citations

Translating guidelines into practice via implementation science: an update in lipidology

Jones

Sturm

Gionfriddo

2022

Current Opinion in Lipidology

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Purpose of reviewGuidelines provide recommendations for clinicians based on the best available evidence and informed by clinical expertise. These recommendations often fail to be utilized by clinicians hindering the translation of evidence into practice. The purpose of this review is to describe novel ways in which implementation science has been used to improve translation of guidelines into clinical practice in the field of lipidology. Recent findingsWe searched PubMed for articles related to guideline implementation in lipidology published in 2021 and 2022. Identified articles were categorized into three domains: first, poor uptake of guideline recommendations in practice; second, implementation science as a solution to improve care; and third, examples of how implementation science can be incorporated into guidelines.

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Section: Implementation Science As a Solution To Improve Carementioning

confidence: 99%

Section: Implementation Science As a Solution To Improve Carementioning

confidence: 99%

Section: Implementation Science As a Solution To Improve Carementioning

confidence: 99%

See 1 more Smart Citation

Translating guidelines into practice via implementation science: an update in lipidology

Jones

Sturm

Gionfriddo

2022

Current Opinion in Lipidology

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“…There is a clear gap between evidence and practice in the identification and management of FH, including the underutilisation of genetic testing and family cascade testing 17. Barriers include a lack of awareness and understanding of FH among many healthcare providers including cardiologists and GPs 20. Implementation science can help bridge these gaps through well-designed research protocols that use strategies such as providing education and resources to support implementation 18 21.…”

Section: Introductionmentioning

confidence: 99%

Implementation of a primary-tertiary shared care model to improve the detection of familial hypercholesterolaemia (FH): a mixed methods pre-post implementation study protocol

Birkenhead,

Sullivan,

Trumble

et al. 2024

BMJ Open

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IntroductionFamilial hypercholesterolaemia (FH) is an autosomal dominant inherited disorder of lipid metabolism and a preventable cause of premature cardiovascular disease. Current detection rates for this highly treatable condition are low. Early detection and management of FH can significantly reduce cardiac morbidity and mortality. This study aims to implement a primary-tertiary shared care model to improve detection rates for FH. The primary objective is to evaluate the implementation of a shared care model and support package for genetic testing of FH. This protocol describes the design and methods used to evaluate the implementation of the shared care model and support package to improve the detection of FH.Methods and analysisThis mixed methods pre-post implementation study design will be used to evaluate increased detection rates for FH in the tertiary and primary care setting. The primary-tertiary shared care model will be implemented at NSW Health Pathology and Sydney Local Health District in NSW, Australia, over a 12-month period. Implementation of the shared care model will be evaluated using a modification of the implementation outcome taxonomy and will focus on the acceptability, evidence of delivery, appropriateness, feasibility, fidelity, implementation cost and timely initiation of the intervention. Quantitative pre-post and qualitative semistructured interview data will be collected. It is anticipated that data relating to at least 62 index patients will be collected over this period and a similar number obtained for the historical group for the quantitative data. We anticipate conducting approximately 20 interviews for the qualitative data.Ethics and disseminationEthical approval has been granted by the ethics review committee (Royal Prince Alfred Hospital Zone) of the Sydney Local Health District (Protocol ID: X23-0239). Findings will be disseminated through peer-reviewed publications, conference presentations and an end-of-study research report to stakeholders.

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“…-FH study proposed multi-level implementation strategies. Reproduced under the CC-BY license from Jones LK et al(49).…”

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confidence: 99%

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

Jones¹,

Calvo²,

Campbell‐Salome³

et al. 2023

Front. Health Serv.

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IntroductionFamilial 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.MethodsData 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.ResultsIn 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.ConclusionThe 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.

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Collaborative Approach to Reach Everyone with Familial Hypercholesterolemia: CARE-FH Protocol

Cited by 7 publications

References 38 publications

Translating guidelines into practice via implementation science: an update in lipidology

Translating guidelines into practice via implementation science: an update in lipidology

Implementation of a primary-tertiary shared care model to improve the detection of familial hypercholesterolaemia (FH): a mixed methods pre-post implementation study protocol

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

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