Stroke disease-specific quality of life trajectories and their associations with caregivers' anxiety, depression, and burden in stroke population: a longitudinal, multicentre study

Abstract

Aims: The aims of this study were to: (i) test if there are clusters of stroke survivors who experience distinct trajectories of quality of life (QOL) from hospital rehabilitation discharge to 12-month follow-up; (ii) test if any sociodemographic or clinical variables predict this class membership; and (iii) examine the associations between the clusters of stroke survivors' and their caregivers' trajectories of anxiety, depression, and burden over time.

Methods and results: A total of 415 stroke survivors and their caregivers were recruited in Italy for this 1-year, longitudinal, multicentre prospective study, filling out a survey at five time points. We found two distinct trajectories of change in stroke survivors' psychological QOL (i.e. Memory, Communication, Emotion, and Participation). The first trajectory (86% of the survivors) included those who started with greater levels of QOL and improved slightly to markedly in all psychological domains, while the second trajectory (14% of the survivors) comprised those who started with lower overall levels of psychological QOL and experienced a worsening or no changes at all in these dimensions up to 12-month follow-up. Very few clinical and sociodemographic variables at baseline predicted class membership. Finally, caregivers of those patients who experienced no change or a worsening in psychological QOL reported greater distress and burden over time.

Conclusion: Our results highlight the need for more tailored interventions to improve patients' psychological QOL and consequently their caregivers' well-being. This requires a shift from a stroke survivor-centred approach to a stroke survivor- and caregiver-centred one.

Keywords: Anxiety; Burden; Caregivers; Depression; QOL; Stroke survivors.