Quality of Life during the First Two Years Post Stroke: The Restore4Stroke Cohort Study

BACKGROUND: Little information is available about the course of quality of life (QoL) post stroke and how dependency on activities of daily living (ADL) influences this course. The aim of this study was therefore to describe the course of QoL from 2 months up to 2 years post stroke and to study the influence of ADL dependency in the first week post stroke. METHODS: This is a multicenter prospective longitudinal cohort study in which 368 stroke patients were included and data were collected at 1 week, 2 months, 6 months, 12 months and 24 months post stroke. QoL assessment included measures of health-related quality of life (HRQoL) (short stroke-specific Quality of Life Scale), emotional functioning (Hospital Anxiety and Depression Scale), participation (Utrecht Scale for Evaluation of Rehabilitation-Participation), and life satisfaction (2LS). Dependency on ADL was defined as having a Barthel Index score ≤17 four days post stroke. Generalized Estimating Equations analyses were performed to examine the course of the 4 domains of QoL. Furthermore, the possible confounding effect of age, gender, marital status, level of education and discharge destination was examined. RESULTS: Results showed that HRQoL, participation and life satisfaction improved during the first year post stroke, with most changes occurring in the first 6 months. Furthermore, patients dependent in ADL scored consistently lower on all 4 QoL domains and test occasions compared to ADL-independent patients. In both patient groups separately, no changes over time were found in emotional functioning. ADL-independent patients improved in HRQoL (p = 0.002), participation (p < 0.001) and life satisfaction (p = 0.020) between 2 and 6 months and in life satisfaction (p = 0.003) between 6 and 12 months also. ADL-dependent patients improved in HRQoL (p = 0.009) between 2 and 6 months and in participation between 2 and 6 months (p = 0.001) and between 6 and 12 months (p = 0.031). Furthermore, they experienced no changes in life satisfaction. No confounding effect was found after adding age, gender, marital status, level of education and discharge destination. CONCLUSIONS: Most improvement in QoL occurred up to 6 months post stroke and showed different patterns for specific domains of QoL and for patients with and without dependency in ADL in the first week post stroke. It is therefore important to differentiate between these different domains of QoL when the long-term perspective is considered. Furthermore, patients dependent in ADL consistently scored lower on all QoL domains and did not reach the level of QoL of patients independent of QoL