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

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 qua...

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Main Authors: Jennifer Cox, Rachel Perry, Fiona J Kinnear, Elaine Wainwright, Fiona E Lithander, Graham Bayly, Alyson Huntley, Julian PH Shield, Aidan Searle
Format: Article
Language:English
Published: BMJ Publishing Group 2019-07-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/9/7/e030290.full
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author Jennifer Cox
Rachel Perry
Fiona J Kinnear
Elaine Wainwright
Fiona E Lithander
Graham Bayly
Alyson Huntley
Julian PH Shield
Aidan Searle
author_facet Jennifer Cox
Rachel Perry
Fiona J Kinnear
Elaine Wainwright
Fiona E Lithander
Graham Bayly
Alyson Huntley
Julian PH Shield
Aidan Searle
author_sort Jennifer Cox
collection DOAJ
description 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.
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spelling doaj-art-6f88476cbe8543cea5aa43a95b157d972024-11-23T05:20:10ZengBMJ Publishing GroupBMJ Open2044-60552019-07-019710.1136/bmjopen-2019-030290Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesisJennifer Cox0Rachel Perry1Fiona J Kinnear2Elaine Wainwright3Fiona E Lithander4Graham Bayly5Alyson Huntley6Julian PH Shield7Aidan Searle81 The National Institute for Health Research (NIHR), Bristol Biomedical Research Centre (BRC), Nutrition theme, University Hospitals Bristol NHS Foundation Trust and the University of Bristol, Bristol, UKUniversity of Bristol, Bristol, UK1 The National Institute for Health Research (NIHR), Bristol Biomedical Research Centre (BRC), Nutrition theme, University Hospitals Bristol NHS Foundation Trust and the University of Bristol, Bristol, UK3 Department for Health, University of Bath, Bath, UK1 The National Institute for Health Research (NIHR), Bristol Biomedical Research Centre (BRC), Nutrition theme, University Hospitals Bristol NHS Foundation Trust and the University of Bristol, Bristol, UK4 Department of Clinical Biochemistry, University Hospitals Bristol NHS Foundation Trust, Bristol, UK5 Population Health Science, Bristol Medical School, University of Bristol, Bristol, UK3 Paediatric Diabetes and Endocrinology, University Hospitals Bristol NHS Foundation Trust, Bristol, UKresearch associateObjectives 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.https://bmjopen.bmj.com/content/9/7/e030290.full
spellingShingle Jennifer Cox
Rachel Perry
Fiona J Kinnear
Elaine Wainwright
Fiona E Lithander
Graham Bayly
Alyson Huntley
Julian PH Shield
Aidan Searle
Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesis
BMJ Open
title Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesis
title_full Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesis
title_fullStr Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesis
title_full_unstemmed Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesis
title_short Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesis
title_sort enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia a qualitative evidence synthesis
url https://bmjopen.bmj.com/content/9/7/e030290.full
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