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

Abstract

ObjectivesIndividuals 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.DesignThis study conducted a thematic synthesis of qualitative studies.Data sourcesMEDLINE, Embase, PsycINFO via OVID, Cochrane library and CINAHL databases and grey literature sources were searched through September 2018.Eligibility criteriaWe 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 synthesisQuality 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.Results24 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.ConclusionsThe 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 numberCRD42018085946.

Identifying and managing autism in adults

“…Autism affects a wide spectrum of individuals in terms of both symptoms and IQ; traditionally it has been thought that approximately 45% of autistic individuals may be non‐verbal or have intellectual disability (ID), while the other 55% are in the average or higher range of IQ . However, some recent studies suggest these rates of co‐occurring conditions are changing, with ID or language delay only being seen in 20–30% of autistic individuals . In addition, autism is reported to be more common in males, with a ratio of approximately 3:1 males to females .…”

The development of a theory informed behaviour change intervention to improve adherence to dietary and physical activity treatment guidelines in individuals with familial hypercholesterolaemia (FH)

“…In the development of this intervention the BCW approach was applied to the results of a previously conducted qualitative evidence synthesis (QES) [16,43]. The aim of this QES was to identify the enablers and barriers faced by individuals with FH in relation to adhering to lifestyle (dietary and physical activity guidelines) and pharmacological treatment.…”

“…In light of the proven benefits of a healthy diet and physical activity upon CVD risk factors in the wider population [10,11], current FH management guidelines emphasise the importance of dietary and physical activity treatment guidelines [12,13]. However adherence has been found to be sub-optimal [14][15][16] and given the potential positive impact of this component of treatment, effective interventions designed to improve these behaviours in individuals with FH are required. This paper describes the development of a theoretically informed behaviour change intervention to improve adherence to dietary and physical activity treatment guidelines in individuals with FH.…”

“…Several aspects of FH, an inherited condition, contribute to a unique context that determines the extent to which these individuals with FH will engage in physical activity and dietary behaviours. These include its asymptomatic nature if compliant with treatment, comparisons with high cholesterol levels caused by lifestyle factors alone, lifelong treatment, outpatient management with infrequent contact with healthcare professionals and a genetic inheritance pattern resulting in each affected individual having at least one affected parent [16]. Due to these several interacting components and the multiple behaviours required to be targeted, the development of a complex intervention is required [17,18].…”

Autism in children: improving screening, diagnosis and support

“…Autism affects a wide spectrum of individuals in terms of both symptoms and IQ; traditionally it has been thought that approximately 45% of autistic individuals may be non‐verbal or have intellectual disability (ID), while the other 55% are in the average or higher range of IQ . However, some recent studies suggest these rates of co‐occurring conditions are changing, with ID or language delay only being seen in 20‐30% of autistic individuals . Autism also tends to be more common in males, with a ratio of 3:1 males to females .…”