Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Nov 27;25(1):1564.
doi: 10.1186/s12913-025-13824-0.

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

Torsten Rackoll  1   2   3   4 , André Ketzer  5 , Bernd Peppmeier  5 , Anna Engel  6 , Matthias Endres  7   8   9   10 , Alexander H Nave  7   8   9   10
Affiliations

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

Torsten Rackoll et al. BMC Health Serv Res. .

Abstract

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.

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 were selected 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.

Keywords: Caregivers; Germany; Lived experience; Patient engagement; Rehabilitation; Research priorities; Stroke; Survey.

PubMed Disclaimer

Conflict of interest statement

Declarations. Ethical approval: This survey received ethical approval by the local ethics board of Charité – Universitätsmedizin Berlin (EA 1/276/22). Consent to participate: All participants provided informed consent. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Origin of participants based on German postal codes
Fig. 2
Fig. 2
Cleveland dot plot with research priority per subgroups ordered by priority
See this image and copyright information in PMC

References

    1. Arumugam A, Phillips LR, Moore A, et al. Patient and public involvement in research: a review of practical resources for young investigators. BMC Rheumatol. 2023;7:2. - DOI - PMC - PubMed
    1. Khankeh H, Guyatt G, Shirozhan S, et al. Stroke patient and stakeholder engagement (SPSE): concepts, definitions, models, implementation strategies, indicators, and frameworksa systematic scoping review. Syst Reviews. 2024;13:271. - DOI - PMC - PubMed
    1. Pfisterer-Heise S, Iannizzi C, Messer S, et al. Stakeholders’ perspectives on patient involvement in systematic reviews results of a world Café in Germany. Zeitschrift für Evidenz Fortbildung Und Qualität Im Gesundheitswesen. 2024;188:26–34. - DOI - PubMed
    1. Broderick JP, Mistry EA. Evolution and future of stroke trials. Stroke. 2024;55:1932–9. - DOI - PMC - PubMed
    1. Norrving B, Barrick J, Davalos A, et al. Action plan for stroke in Europe 20182030. Eur Stroke J. 2018;3:309–36. - DOI - PMC - PubMed

LinkOut - more resources