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Understanding how educational interventions improve treatment adherence in patients with familial hypercholesterolaemia: a systematic review


Effective treatments for familial hypercholesterolaemia (FH) offer patients the opportunity of normal life expectancy, but lifelong adherence to both lipid-lowering therapies and lifestyle measures is challenging, and thus, this is rarely achieved. The aim of this systematic review is to identify attributes of educational interventions that promote adherence to treatment in FH. A systematic literature search was undertaken using Medline, CINAHL, HMIC and Embase. Papers were included based upon pre-defined inclusion and exclusion criteria; the quality of each included paper was assessed using the MERSQI scoring system. Relevant data were extracted, and a narrative synthesis was created. Six relevant studies of varying methodological quality were found amongst 2963 papers identified during the search. In total, there were 619 patients with FH in the intervention arm of the relevant studies. All six studies showed a positive effect of education on adherence to FH treatment; however, only two papers observed a statistically significant effect. Assessment was limited to the short-term. Four themes were identified as important when using education to improve treatment adherence: involving family, patient empowerment, practical problem solving and use of information leaflets. Educational interventions improve short term treatment adherence in patients with FH. Successful interventions are those that involve the whole family, set practical problem solving tasks, and that use techniques to increase the patients self-efficacy. This should all be supported by contemporaneous provision of written, age-appropriate information. There were no studies looking at education and long-term adherence in FH patients, and more research is needed in this area.

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Hannah Massey undertook the review and wrote the first article draft as part of a dissertation for MClinEd. Barbara Jennings supervised the dissertation and edited the manuscript. Zosia Miedzybrodzka edited the manuscript.

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Correspondence to Hannah Massey.

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Massey, H., Jennings, B. & Miedzybrodzka, Z. Understanding how educational interventions improve treatment adherence in patients with familial hypercholesterolaemia: a systematic review. J Community Genet 14, 5–15 (2023).

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  • Familial hyperlipidaemia
  • Education
  • Adherence