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

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.