Purpose: To analyse trends in quality of life (QoL) development among older stroke patients within the first year after rehabilitation discharge, and to investigate the impact of including proxy interviews in research and practice.
Methods: A prospective cohort study with follow-up at 3, 6, and 12 months with 411 patients and proxy respondents was conducted. The EUROHIS-QOL 8-item index was used to assess QoL. By performing descriptive analyses, QoL development over time was compared among subgroups. Linear mixed models were calculated to estimate mean changes from baseline to 12-month follow-up. The effects of patient characteristics and time on QoL were investigated using comprehensive mixed models.
Results: One year after rehabilitation discharge, the majority of patients had neither maintained nor regained their initial QoL. Proxy respondents reported significantly lower QoL (22.6-29.5 points, p < 0.001). Characteristics associated with lower QoL were stroke severity, depression, and pain. Having a small social network was negatively associated with QoL (-1.66 points, 95%CI: -2.84/-0.48, p = 0.006).
Conclusions: Quality of life scores reported at the time of rehabilitation discharge are often not lasting. Including severely impaired patients via proxies reduces the risk of overestimating QoL outcomes. Outpatient's characteristics should be taken into account when planning therapy strategies to maintain previously achieved health goals. Regular re-assessments are required.Implications for rehabilitationThere should be an awareness that improvements in quality of life (QoL) achieved during rehabilitation are not sustainable.Regularly re-assessing pain status, psychological burden, and social network size could help clinicians to determine treatment strategies for maintaining and improving rehabilitation achievements.Conducting proxy interviews is required to assess disease burden of patients with severe stroke (e.g., non-linguistic patients).
Keywords: Stroke; patient-reported outcome measures; proxy; quality of life; social networks.