Significant other reported outcome measures within European cohorts of severely injured patients: A systematic review

Abstract

Major trauma can have a long-term impact, leading to diminished health-related quality of life (HRQoL) for patients and their significant others (SOs). Patient reported outcome measures (PROMs) make this impact visible, providing expectation- and self-management. European studies assessing Significant Other Reported Outcome Measures (SOROMs) in cohorts of severely injured patients were reviewed. A systematic literature search was conducted. European studies from 2000 onwards assessing SOROMs in severely injured patient cohorts were included. Two reviewers independently screened all records, consensus was reached by a third reviewer. 2,909 studies were screened, resulting in 30 inclusions. Studies originated from Western and Northern Europe, overrepresented by traumatic brain injury (n = 27, 90%). Forty-three different SOROMs were identified. Twenty (67%) studies reported subacute and long-term reduction in HRQoL, and high prevalence (28–56%) of depression, anxiety, and stress within SOs. Outcomes of SOs and patients run parallel and are associated with coping strategies. Sixteen (53%) studies reported around 50% of unmet family needs (information and emotional support), and a disproportionate burden of care associated with loneliness and life satisfaction. SOs of severely injured patients reported reduced HRQoL, with high levels of depression, anxiety, and stress in the acute stage. Levels decline over time, but remain elevated in the long-term. Family bonding and social opportunities encourages secondary coping strategies, dampening mental issues and increasing patients’ HRQoL. Subacute and long-term interaction of SO and patient is crucial for rehabilitation and caregiver burden. The wide variety of SOROMs could benefit from a collateral standardisation with PROMs.