Long-term health-related quality of life of stroke survivors and their spousal caregivers.

As treatment for stroke has improved, individuals are living longer with the effects of a stroke. The resulting long-term impairment can affect both survivors’ of stroke (SS) and their caregivers’ (CG) health related quality of life (HRQOL). Few studies have examined the HRQOL of SS and their CG greater than two years post stroke. SS and their spousal CG (n=30 dyads) who had previously completed a 12-month study following discharge from inpatient rehabilitation were assessed at 3–5 years post stroke. Health related quality of life (HRQOL) and related outcomes were measured for SS and CG. Data from baseline to 12 months were used in conjunction with data from the present study. Linear mixed models were used to analyze the change in repeated measures over time. Multiple linear regression was used to analyze the relationship of generic HRQOL to related psychosocial outcomes. SS were an average of 4.68 years post stroke. The mean age for SS and CG was 70.8 and 64.9 years, respectively. The majority of SS were male (80%) and non-Hispanic white (70%). Among SS, depression decreased from baseline to 12 months (p=0.04) but increased from 12 months to end of follow-up (p=0.003). CG depression decreased from baseline to all time points (p=0.015). Stroke-specific HRQOL showed statistically significant (p < 0.03) decreases between 12 months and end of follow-up. Increased number of illnesses and older age were associated with CG lower physical HRQOL score (p=0.004). Higher depression was associated with lower mental HRQOL score for both CG and SS (p= 0.003 & p=0.011, respectively). SS and CG continue to experience negative stroke related health outcomes for many years after the initial stroke; some of these outcomes even worsen over time. These findings illustrate the need for ongoing psychological and medical evaluation for both long-term SS and CG. Development and testing of targeted behavioral interventions are also warranted.