How do the experiences and beliefs of adults and children with heterozygous familial hypercholesterolaemia influence their adherence to treatment? A systematic review of qualitative evidence protocol.

摘要: Heterozygous familial hypercholesterolaemia (FH) is a genetic disorder characterised by elevated levels of low density lipoprotein (LDL) cholesterol from birth, estimated to affect 1 in 250 the UK population. Left untreated, FH substantially increases an individual’s risk premature coronary heart disease (CHD) and associated mortality. This can be minimised with timely diagnosis successful treatment medication lifestyle changes, as advocated national international guidelines. Despite these recommendations, limited research available suggests adherence may sub-optimal. review will identify synthesise qualitative regarding experiences beliefs adults children relation their condition its treatment, influence upon adherence. The following electronic databases searched inception: Cochrane library, MEDLINE, Embase, PsycINFO (via OVID) CINAHL. Studies English reporting primary data included. Database searching supplemented searches relevant specialist websites. references identified papers also hand searched. Two reviewers independently screen titles abstracts studies, full texts potentially retrieved for against pre-defined inclusion exclusion criteria. Critical Appraisal Skills Programme (CASP) Qualitative Research checklist used assess quality included results taken into consideration when findings. A extraction tool created use this extract study findings questions. thematic synthesis approach analyse results. Adherence recommendations crucial management subsequent decrease CHD later life. Common themes could provide understanding which insight perceived barriers facilitators. are intended development future interventions or guidelines FH. PROSPERO registration number: CRD42018085946