Considerable overlap exists between barriers and facilitators related to care for familial hypercholesterolemia (FH), according to study results presented at the National Lipid Association Scientific Sessions, from June 2 to 5, 2022, in Scottsdale, Arizona.
FH is associated with premature cardiovascular disease. Although effective diagnostic criteria and therapies are available, FH is vastly underdiagnosed and undertreated. In order to evaluate barriers to FH care, investigators at the Geisinger Commonwealth School of Medicine searched publication databases through December 2021 for studies regarding barriers and facilitators of FH.
A total of 26 articles were evaluated for determinants at the individual, clinician, health system, and research levels.
The investigators found that at the individual level, cost, lack of awareness, absent or limited insurance coverage, nonadherence, side effects, competing family or personal demands, stigma and health anxiety, familial social dynamics, education, privacy concerns, discrimination, access to health care or patient support organizations, relationship with physicians or the health care system, and not achieving target low-density lipoprotein cholesterol levels with current therapies were significant barriers.
At the clinician level, lack of awareness, belief in lack of evidence, perception, other clinical demands, inadequate record keeping, legal concerns, poor insurance reimbursement, education, and skill comfort with genetic disorders were endorsed as barriers.
For the health system, gaps in access to care, lack of focus on prevention, cost, genetic testing resources, and lack of formal screening programs were barriers.
At the research level, the barriers included difficulty in identifying FH probands and paucity of data on ideal treatments.
In general, barriers affected treatment more than identification or cascade testing.
The study authors concluded there was substantial literature on barriers and facilitators to FH care that could help inform interventions.
“Future interventions should target barriers reported across several studies or address combinations of identification, cascade testing, and treatment,” the study authors noted. “Facilitators that have positively impacted multiple aspects of FH care should be promoted and incorporated into care delivery.”
Rodriguez G, Calvo EM, Walters NL, et al. Barriers and Facilitators to Identification, Cascade Testing, and Treatment for Familial Hypercholesterolemia: A Scoping Review. Presented at: National Lipid Association Scientific Sessions; June 2-5, 2022; Scottsdale, AZ. Poster 24.