Stroke survivors' priorities for research related to life after stroke

Abstract

Background: Stroke has transitioned from an untreatable, unpreventable disease to a highly treatable and preventable disease over recent decades, and the number of stroke survivors is expected to increase. The number is also foreseen to grow larger as a result of an aging population. With an escalating number of stroke survivors, research on how to improve life after stroke is needed.

Aims: The primary aim was to determine which area of research related to life after stroke that stroke patients and their informal carers prioritized as being relevant and valuable.

Methods: A cross-sectional study of all patients who had completed the 12 months of follow-up in the EFFECTS trial. In the questionnaire the stroke patients and their informal carers were asked to prioritize areas of research they considered important and valuable with respect to their life after stroke.

Results: Of the 731 patients who were still alive after the 12 months-follow-up, 589 responded. The most prioritized areas of research were Balance and walking difficulties (290 (49%) responders) and Post-stroke fatigue (173 (29%) responders). Women answered the undefined alternative "other" more often than men (43 women (11%) versus 11 men (6%), p = .04). Younger patients prioritized Post-stroke fatigue to a higher extent (88 (45%) versus (22%), p < .001), and elderly prioritized Balance and walking difficulties (214 (54%) versus 76 (40%), p = .002) and Speech difficulties (38 (10%) versus 9 (5%), p = .045).

Conclusions: Life after stroke is perceived differentely with aging. Future research should address strategies to face challenges such as imbalance and walking difficulties and post-stroke-fatigue.

Keywords: Stroke; life after stroke; patient involvement; post-stroke fatigue; post-stroke mobility; research priorities; stroke-recovery.