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

F.J Kinnear* (Corresponding Author), E Wainwright, R Perry, F.E Lithander, G Bayly, A Huntley, J Cox, J.P.H Shield, A Searle

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

44 Citations (Scopus)
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Objectives:- Individuals with heterozygous familial hypercholesterolemia (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:- 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 (246 individuals with FH and 13 of their family members) across eight countries were included. Data captured within 20 descriptive themes were considered in relation to treatment adherence and six 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 (e.g. ?commencement of treatment from a young age?) and six barriers (e.g. ?incorrect and/or inadequate knowledge of treatment advice?) to treatment adherence. There was 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 utilised in clinical practice to facilitate optimal adherence to lifelong treatment thereby minimising the risk of CVD in this vulnerable population.
Original languageEnglish
Article numbere030290
Number of pages18
JournalBMJ Open
Issue number7
Early online date31 Jul 2019
Publication statusPublished - Jul 2019

Bibliographical note

This evidence synthesis is funded by the National Institute for Health
Research NIHR Bristol Biomedical Research Centre (Nutrition theme) at University Hospitals Bristol NHS Foundation Trust and The University of Bristol.

Data Availability Statement

All data relevant to the study are included in the article or uploaded as supplementary information


  • coronary heart disease
  • preventive medicine
  • qualitative research
  • lipid disorders
  • paediatric cardiology
  • nutrition and dietetics


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