Patient perspective and research prioritization in rehabilitation after stroke - results from an online survey in Germany

Background People with lived experience (pwle) of stroke including survivors and informal caregivers offer critical insights into research needs. This study aimed to identify stroke rehabilitation research priorities in Germany from the perspective of pwle, and to explore variation by age, sex, and time since stroke. Patients and methods A cross-sectional, web-based survey was conducted nationwide in Germany. The survey included closed- and open-ended questions and was distributed via stroke support organizations, clinical partners, and previous study networks. Responses were analyzed descriptively and thematically. Results A total of 470 individuals responded, including 305 stroke survivors and 133 informal caregivers. The most frequently selected research priorities were cognition and mobility. Participants aged ≤ 65 years emphasized cognition, while older participants more often prioritized mobility and speech. Women more frequently selected cognition, and men mobility. Participants with longer time since stroke emphasized secondary prevention. Open-text responses identified additional priorities, including social participation, sexuality, and the need for individualized therapy approaches. A small subgroup of caregivers of pediatric stroke survivors prioritized cognition, participation, and self-care. Overall, 75% of respondents expressed interest to be engaged in future research. Conclusions Cognition and mobility emerged as key research priorities, with meaningful variation across demographic and clinical subgroups. These findings support the inclusion of diverse pwle perspectives in shaping national stroke research agendas and underscore the importance of tailoring rehabilitation research to stakeholder-identified needs. Clinical trial number: not applicable.