Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2019 Jul 31;9(7):e030290.
doi: 10.1136/bmjopen-2019-030290.

Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesis

Fiona J Kinnear  1 , Elaine Wainwright  2   3 , Rachel Perry  4 , Fiona E Lithander  4 , Graham Bayly  5 , Alyson Huntley  6 , Jennifer Cox  4 , Julian Ph Shield  4 , Aidan Searle  4
Affiliations
Review

Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesis

Fiona J Kinnear et al. BMJ Open. .

Abstract

Objectives: Individuals with heterozygous familial hypercholesterolaemia (FH) are at high risk of developing cardiovascular disease (CVD). This risk can be substantially reduced with lifelong pharmacological and lifestyle treatment; however, research suggests adherence is poor. We synthesised the qualitative research to identify enablers and barriers to treatment adherence.

Design: This study conducted a thematic synthesis of qualitative studies.

Data sources: MEDLINE, Embase, PsycINFO via OVID, Cochrane library and CINAHL databases and grey literature sources were searched through September 2018.

Eligibility criteria: We included studies conducted in individuals with FH, and their family members, which reported primary qualitative data regarding their experiences of and beliefs about their condition and its treatment.

Data extraction and synthesis: Quality assessment was undertaken using the Critical Appraisal Skills Programme for qualitative studies. A thematic synthesis was conducted to uncover descriptive and generate analytical themes. These findings were then used to identify enablers and barriers to treatment adherence for application in clinical practice.

Results: 24 papers reporting the findings of 15 population samples (264 individuals with FH and 13 of their family members) across 8 countries were included. Data captured within 20 descriptive themes were considered in relation to treatment adherence and 6 analytical themes were generated: risk assessment; perceived personal control of health; disease identity; family influence; informed decision-making; and incorporating treatment into daily life. These findings were used to identify seven enablers (eg, 'commencement of treatment from a young age') and six barriers (eg, 'incorrect and/or inadequate knowledge of treatment advice') to treatment adherence. There were insufficient data to explore if the findings differed between adults and children.

Conclusions: The findings reveal several enablers and barriers to treatment adherence in individuals with FH. These could be used in clinical practice to facilitate optimal adherence to lifelong treatment thereby minimising the risk of CVD in this vulnerable population.

Prospero registration number: CRD42018085946.

Keywords: coronary heart disease; lipid disorders; nutrition & dietetics; paediatric cardiology; preventive medicine; qualitative research.

PubMed Disclaimer

Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1
Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram. FH, familial hypercholesterolaemia.
Figure 2
Figure 2
Thematic schema illustrating influence of analytical themes on treatment adherence.
See this image and copyright information in PMC

References

    1. Akioyamen LE, Genest J, Shan SD, et al. . Estimating the prevalence of heterozygous familial hypercholesterolaemia: a systematic review and meta-analysis. BMJ Open 2017;7:e016461 10.1136/bmjopen-2017-016461 - DOI - PMC - PubMed
    1. Benn M, Watts GF, Tybjærg-Hansen A, et al. . Mutations causative of familial hypercholesterolaemia: screening of 98 098 individuals from the Copenhagen general population study estimated a prevalence of 1 in 217. Eur Heart J 2016;37:1384–94. 10.1093/eurheartj/ehw028 - DOI - PubMed
    1. Wong B, Kruse G, Kutikova L, et al. . Cardiovascular disease risk associated with familial hypercholesterolemia: a systematic review of the literature. Clin Ther 2016;38:1696–709. 10.1016/j.clinthera.2016.05.006 - DOI - PubMed
    1. Civeira F, International Panel on Management of Familial Hypercholesterolemia . Guidelines for the diagnosis and management of heterozygous familial hypercholesterolemia. Atherosclerosis 2004;173:55–68. 10.1016/j.atherosclerosis.2003.11.010 - DOI - PubMed
    1. Humphries SE, Cooper JA, Seed M, et al. . Coronary heart disease mortality in treated familial hypercholesterolaemia: update of the UK Simon Broome FH register. Atherosclerosis 2018;274:41–6. 10.1016/j.atherosclerosis.2018.04.040 - DOI - PMC - PubMed

Publication types

MeSH terms

LinkOut - more resources