Caregiver Burden among Individuals Providing Informal Caregiving to Survivors of Major Adverse Cardiac Event (MACE): A Systematic Review

To conduct a systematic literature review (SLR) of informal caregiver burden (ICB) among caregivers of adults with Major Adverse Cardiac Events (MACE). A SLR was conducted in six electronic databases [PubMed, CINAHL, Embase, Dissertation Abstracts International/Proquest, Scopus, and PsycINFO] along with cross-referencing from included studies using search-terms tailored for each database. Per PRISMA guidelines, a-priori study inclusion criteria included published and unpublished English language studies from 01/01/2000-11/28/2017of randomized controlled trials or observational studies of adults (≥18 years) with MACE (myocardial infarction (MI)/stroke/hospitalization due to unstable angina/coronary revascularization) and their caregivers. Informal caregivers included close family members, relatives, or friends who did not receive reimbursement and did not have any organizational affiliations or certifications for caregiving. Final study selection, quality-assessment, and data abstraction were conducted independently by two reviewers with disagreements resolved through consensus. Only two of the included studies (N=143) were conducted in MI survivors; the remaining were in stroke survivors. Most (95.1%) studies were observational and conducted in US (28.67%). No consistent measure of ICB was found and the burden was reported in terms of hours spent in caregiving, ICB opportunity costs, and impact on quality of life of caregiver assessed using the EQ-5D, and other caregiving burden scales. Mean number of hours spent in ICB ranged from 58-108 per week. Cost varied based on study methodology and the country of origin; ranging from US$3,700-US$7,900/year for stroke patients with/without complications, and total US economic ICB ranging from US$4.2-26.8 billion annually. Few (2.8%) studies reported EQ-5D (mean scores ranging 0.5-0.8). Posttraumatic growth and higher mortality rates were reported in terms of MI ICB. This comprehensive SLR underscores the high ICB among caregivers for individuals with MACE. Studies that omit this important component underestimate the true burden of MACE and potentially the value of CV risk reduction.