Patient experiences align with the familial hypercholesterolemia global call to action

Jones, Laney K.; Walters, Nicole; Brangan, Andrew; Ahmed, Catherine D.; Wilemon, Katherine; Campbell‐Salome, Gemme; Rahm, Alanna Kulchak; Gidding, Samuel S.; Sturm, Amy C.

doi:10.1016/j.ajpc.2022.100344

Cited by 5 publications

(5 citation statements)

References 19 publications

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“…Patient and family lived experience perspectives have now been mapped to the priorities outlined in the 2020 FH Global Call to Action [ 25 , 35 ]. Patients reported whilst some family members were receptive to information; others avoided or reacted negatively to information about FH.…”

Section: Assessing Barriers and Enablers To Implementationmentioning

confidence: 99%

“…Whilst greater use of combination therapy is indicated to improve FH management [ 24 ], barriers such as a general lack of awareness of FH among general practitioners, discomfort starting lipid-lowering treatment in younger patients, media misinformation and poor medication adherence exist [ 34 ]. Additionally, people with FH have indicated that improvements in screening and family-based care are needed [ 35 ].…”

Section: Introductionmentioning

confidence: 99%

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How Can Implementation Science Improve the Care of Familial Hypercholesterolaemia?

Sarkies

Jones

Pang

et al. 2023

Curr Atheroscler Rep

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Purpose of Review Describe the application of implementation science to improve the detection and management of familial hypercholesterolaemia. Recent Findings Gaps between evidence and practice, such as underutilization of genetic testing, family cascade testing, failure to achieve LDL-cholesterol goals and low levels of knowledge and awareness, have been identified through clinical registry analyses and clinician surveys. Implementation science theories, models and frameworks have been applied to assess barriers and enablers in the literature specific to local contextual factors (e.g. stages of life). The effect of implementation strategies to overcome these factors has been evaluated; for example, automated identification of individuals with FH or training and education to improve statin adherence. Clinical registries were identified as a key infrastructure to monitor, evaluate and sustain improvements in care. Summary The expansion in evidence supporting the care of familial hypercholesterolaemia requires a similar expansion of efforts to translate new knowledge into clinical practice.

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Section: Assessing Barriers and Enablers To Implementationmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

How Can Implementation Science Improve the Care of Familial Hypercholesterolaemia?

Sarkies

Jones

Pang

et al. 2023

Curr Atheroscler Rep

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“…Researchers have hypothesized that the indirect impacts of the COVID‐19 pandemic in low‐socioeconomic families is due to the inability to recoup lost wages from unemployment, as lower SES were more likely to be impacted by layoffs and the potential loss of employer‐provided health insurance 70,71 . Ultimately, the lack of general coverage prevails in low‐income households and will only worsen the care of FH due to the inability to meet the financial demands of management during the insecurities perpetuated by the pandemic 72 …”

Section: Exacerbating Factors Of the Covid‐19 Pandemic That Negativel...mentioning

confidence: 99%

“…70,71 Ultimately, the lack of general coverage prevails in low-income households and will only worsen the care of FH due to the inability to meet the financial demands of management during the insecurities perpetuated by the pandemic. 72…”

Section: Socioeconomic Disparities and Financial Insecurity Perpetuat...mentioning

confidence: 99%

Barriers and shortcomings in access to cardiovascular management and prevention for familial hypercholesterolemia during the COVID‐19 pandemic

Huang

Leung

Garg

et al. 2023

Clinical Cardiology

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Familial hypercholesterolemia (FH) is a hereditary condition caused by mutations in the lipid pathway. The goal in managing FH is to reduce circulating low‐density lipoprotein cholesterol and, therefore, reduce the risk of developing atherosclerotic cardiovascular disease (ASCVD). Because FH patients were considered high risk groups due to an increased susceptible for contracting COVID‐19 infection, we hypothesized whether the effects of the pandemic hindered access to cardiovascular care. In this review, we conducted a literature search in databases Pubmed/Medline and ScienceDirect. We included a comprehensive analysis of findings from articles in English related and summarized the effects of the pandemic on cardiovascular care through direct and indirect effects. During the COVID‐19 pandemic, FH patients presented with worse outcomes and prognosis, especially those that have suffered from early ASCVD. This caused avoidance in seeking care due to fear of transmission. The pandemic severely impacted consultations with lipidologists and cardiologists, causing a decline in lipid profile evaluations. Low socioeconomic communities and ethnic minorities were hit the hardest with job displacements and lacked healthcare coverage respectively, leading to treatment nonadherence. Lock‐down restrictions promoted sedentary lifestyles and intake of fatty meals, but it is unclear whether these factors attenuated cardiovascular risk in FH. To prevent early atherogenesis in FH patients, universal screening programs, telemedicine, and lifestyle interventions are important recommendations that could improve outcomes in FH patients. However, the need to research in depth on the disproportionate impact within different subgroups should be the forefront of FH research.

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“…Disbelief in the diagnosis of FH also has a negative impact on adherence to LLT in FH. In a study of individuals and families with FH involving interview and focus groups, some FH patients reported their willingness to begin treatment if they better understood and accepted the nature of the diagnosis of FH [39]. The presence of other cardiovascular co-morbidities, such as hypertension, obesity and/or diabetes, may have paradoxical effect on adherence and nonadherence to LLT.…”

Section: Factors Affecting Treatment Adherence In Familial Hyperchole...mentioning

confidence: 99%

Adherence to pharmacotherapy: sine qua non for reducing cumulative risk of premature coronary disease in familial hypercholesterolemia

Pang,

Sanfilippo,

Chan

et al. 2023

Current Opinion in Endocrinology, Diabetes &Amp; Obesity

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Purpose of review Familial hypercholesterolemia (FH) is a dominant and highly penetrant monogenic disorder present from birth that markedly elevates plasma low-density lipoprotein (LDL)-cholesterol concentration and, if untreated, leads to atherosclerotic cardiovascular disease (ASCVD). The risk of ASCVD can be substantially reduced with lipid-lowering treatment (LLT). However, adherence to LLT remains a major challenge in FH patients and an under-recognized issue. We review several barriers to treatment adherence and implementation strategies for improving adherence in patients with FH. Recent findings Barriers that negatively affect patient adherence to treatment include the misunderstanding of perceived and actual risk of FH and the benefits of LLT, inadequate knowledge, lack of standardization of treatment, insufficient monitoring of LDL-cholesterol level, and inequalities in healthcare resources. Education of patients, carers and healthcare providers, guideline-directed treatment goals, regular monitoring, medication regimen simplification and greater access to established and new drugs are crucial enablers for improving adherence to treatment. However, given FH is present from birth, strategies for life-long adherence from childhood or young adulthood is critically important and requires further study. To be effective, strategies should be multifaceted, targeted and patient-centred involving a multidisciplinary-team with support from family, communities and peer groups. Summary FH confers a significant risk for ASCVD from a young age. Achieving better medication adherence is foundational for improving clinical outcomes and reducing the burden of atherosclerosis over a lifetime. Identification of key barriers and enablers are critical for implementing better adherence to treatment across the life-course of patients with FH.

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Patient experiences align with the familial hypercholesterolemia global call to action

Cited by 5 publications

References 19 publications

How Can Implementation Science Improve the Care of Familial Hypercholesterolaemia?

How Can Implementation Science Improve the Care of Familial Hypercholesterolaemia?

Barriers and shortcomings in access to cardiovascular management and prevention for familial hypercholesterolemia during the COVID‐19 pandemic

Adherence to pharmacotherapy: sine qua non for reducing cumulative risk of premature coronary disease in familial hypercholesterolemia

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