Caregiver Burden Among Patients With COVID-19: A Systematic Literature Review of Real-World Evidence

OBJECTIVES: The impact of coronavirus 2019 (COVID-19) on patients has been well documented, while there is a significant gap in systematically reviewing its effects on caregivers’ well-being. This study synthesized real-world evidence (RWE) studies characterizing the burden of a patient’s COVID-19 illness on informal caregivers.

METHODS: A systematic literature review (SLR) was conducted using six databases, including the Cochrane Database of Systematic Reviews, Embase, MEDLINE via PubMed, Ovid, PsycNet, and Web of Science. The review included real-world quantitative studies evaluating the health-related quality of life (HRQoL) and productivity loss experienced by caregivers of patients with COVID-19.

RESULTS: A total of 27,376 records were identified, of which 15,882 titles/abstracts were screened, and 570 full-text articles were subsequently reviewed from January 2020 to May 2024. Thirty studies (HRQoL: 27; productivity: 2; both: 1), including 29 studies from 14 countries and one global study, were included in the review. Approximately 14,673 informal caregivers (i.e., offering care without financial compensation) of COVID-19 patients, including those with symptomatic infections as well as acute and long-term cases, were examined. The estimated mean (SD) daily hours of caregiving were 5.29 (2.98) and 3.04 (2.84) in Iran and the United Kingdom, respectively. Twenty-eight studies assessed HRQoL outcomes, predominantly psychological burden, using more than 34 standard patient-reported outcome (PRO) measures and/or specific questionnaires. Approximately two-thirds of the caregivers of COVID-19 patients experienced worsening HRQoL and increased psychological issues, which were more pronounced in caregivers of hospitalized/severe patients. Moderate-to-severe levels of stress, anxiety and depression were found among up to 95.7%, 81.8% and 47.6% of caregivers, respectively.

CONCLUSIONS: A substantial body of RWE characterizes HRQoL outcomes using various PROs, highlighting a significant humanistic burden among caregivers of patients with COVID-19. However, limited data exists to assess the impact on work productivity of caregivers due to patient’s illness, warranting further research.