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

Abstract

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.