Abstract

Introduction: Stroke symptoms often predict disability and low quality of life (QOL) in stroke survivors. Stroke survivors’ QOL could have an influence on their caregivers’ variables, such as anxiety, depression or burden and consequently caregivers’ QOL. Hypothesis: The aims of this study were to: 1) identify the distinct trajectories of the stroke specific QoLs in stroke survivors; 2) examine the associations between the stroke survivors’ QoL trajectories and caregivers’ anxiety, depression and burden over time. Methods: A longitudinal, multicentre study was conducted. A sample of 415 stroke survivors and their caregivers, after the stroke survivors’ discharge from rehabilitation hospitals, were enrolled. Stroke Impact Scale (SIS) 3.0 was used to assess the QOL of the stroke survivor. Caregiver trajectories for anxiety and depression were assessed with the Hospital Anxiety Depression Scale (HADS) while caregiver burden with Caregiver Burden Inventory (CBI). The Latent Class Growth Analyses (LCGA) were used to define the trajectories of the dimensions of the QOL. Results: Stroke survivors had similar trajectories on physical QOL dimensions. Differently, for SIS communication, emotional and memory dimensions, we identified two distinct trajectories. The first trajectory, representing 86% of survivors, included those who started with higher QOL levels and improved slightly to markedly in all psychological domains, with this improvement decelerating over time. The second trajectory (14% of survivors) included those who started with low overall levels of psychological QoL and experienced linear worsening of Memory and Communication, starting in the third month, and no change in Emotion and Participation. Caregivers of those patients in the second class experienced worse anxiety, depression and burden over time, compared to caregivers of patients in the first one. Conclusions: Our results identified several important risk factors for specific survival patterns that reinforce the need for more tailored interventions in order to improve stroke survivors’ QOL and consequently the caregiver anxiety, depression and burden. This requires a shift from a stroke survivor-centered approach to a stroke survivor and caregiver-centered approach.

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