Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia

A qualitative evidence synthesis

Fiona J. Kinnear, Elaine Wainwright, Rachel Perry, Fiona E. Lithander, Graham Bayly, Alyson Huntley, Jennifer Cox, Julian P.H. Shield, Aidan Searle

Research output: Contribution to journalArticle

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.

Original languageEnglish
Article numbere030290
Pages (from-to)1-18
Number of pages18
JournalBMJ Open
Volume9
Issue number7
DOIs
Publication statusPublished - 31 Jul 2019

Keywords

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

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia : A qualitative evidence synthesis. / Kinnear, Fiona J.; Wainwright, Elaine; Perry, Rachel; Lithander, Fiona E.; Bayly, Graham; Huntley, Alyson; Cox, Jennifer; Shield, Julian P.H.; Searle, Aidan.

In: BMJ Open, Vol. 9, No. 7, e030290, 31.07.2019, p. 1-18.

Research output: Contribution to journalArticle

Kinnear, FJ, Wainwright, E, Perry, R, Lithander, FE, Bayly, G, Huntley, A, Cox, J, Shield, JPH & Searle, A 2019, 'Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: A qualitative evidence synthesis', BMJ Open, vol. 9, no. 7, e030290, pp. 1-18. https://doi.org/10.1136/bmjopen-2019-030290
Kinnear, Fiona J. ; Wainwright, Elaine ; Perry, Rachel ; Lithander, Fiona E. ; Bayly, Graham ; Huntley, Alyson ; Cox, Jennifer ; Shield, Julian P.H. ; Searle, Aidan. / Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia : A qualitative evidence synthesis. In: BMJ Open. 2019 ; Vol. 9, No. 7. pp. 1-18.
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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.",
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T1 - Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia

T2 - A qualitative evidence synthesis

AU - Kinnear, Fiona J.

AU - Wainwright, Elaine

AU - Perry, Rachel

AU - Lithander, Fiona E.

AU - Bayly, Graham

AU - Huntley, Alyson

AU - Cox, Jennifer

AU - Shield, Julian P.H.

AU - Searle, Aidan

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N2 - 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.

AB - 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.

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KW - lipid disorders

KW - nutrition & dietetics

KW - paediatric cardiology

KW - preventive medicine

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