The association of stroke severity with health-related quality of life in survivors of acute cerebrovascular disease and their informal caregivers during the first year post stroke: a survey study

PURPOSE: To describe the health-related quality of life (HRQoL) of caregivers and survivors of transient ischaemic attack (TIA) and stroke during one year post discharge in comparison to age- and sex-matched population norms; and to analyse the association of initial stroke severity, measured by a routinely used stroke-specific scale, on subsequent HRQoL of caregivers and survivors. METHODS: Cohort of hospitalized patients with TIA and stroke discharged alive from a large university hospital in Norway, and their informal caregivers. Questionnaires at 3 and 12 months post discharge were filled out by caregivers (n = 320 and n = 326, respectively) and survivors (n = 368 and n = 383, respectively). Multivariable linear regression analyses tested associations between initial stroke severity (National Institutes of Health Stroke Scale, NIHSS) and HRQoL (EQ-5D-3L) in caregivers and survivors. RESULTS: Caregivers of survivors with TIA or stroke did not report lower HRQoL than matched norms. There was some evidence of an association of the NIHSS with caregiver HRQoL at 3 months only (age–sex-adjusted coefficient − 0.01, p = 0.008), however, this was attenuated after additional adjustments. Survivors with stroke, but not TIA, reported lower HRQoL than population norms at both time points. There was a negative association between higher NIHSS scores and survivors’ HRQoL; fully adjusted coefficient − 0.01 at both time points (p = 0.001). CONCLUSION: The informal caregivers and survivors with TIA did not report lower than expected HRQoL. Increasing stroke severity was associated with decreasing HRQoL among survivors, but had limited predictive value among caregivers. Other factors may therefore be better indicators of ‘at risk’ caregivers. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11136-020-02516-3) contains supplementary material, which is available to authorized users.