Journal Article

DZNE-2025-01339

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png Patient perspective and research prioritization in rehabilitation after stroke - results from an online survey in Germany.

Rackoll, T. ; Ketzer, A. ; Peppmeier, B. ; Engel, A. ; Endres, M.DZNE* ; Nave, A. H.

2025
BioMed Central London

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Please use a persistent id in citations: doi:10.1186/s12913-025-13824-0

Abstract: 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.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.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.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.Not applicable.

Keyword(s): Humans (MeSH) ; Male (MeSH) ; Female (MeSH) ; Germany (MeSH) ; Stroke Rehabilitation (MeSH) ; Aged (MeSH) ; Cross-Sectional Studies (MeSH) ; Middle Aged (MeSH) ; Adult (MeSH) ; Surveys and Questionnaires (MeSH) ; Caregivers: psychology (MeSH) ; Aged, 80 and over (MeSH) ; Stroke: psychology (MeSH) ; Internet (MeSH) ; Rehabilitation Research (MeSH) ; Caregivers ; Germany ; Lived experience ; Patient engagement ; Rehabilitation ; Research priorities ; Stroke ; Survey

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Contributing Institute(s):

1. Interdisciplinary Dementia Research (AG Endres)

Research Program(s):

1. 353 - Clinical and Health Care Research (POF4-353) (POF4-353)

Appears in the scientific report 2025

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Database coverage:
; ; ; ; Article Processing Charges ; Clarivate Analytics Master Journal List ; Current Contents - Clinical Medicine ; DOAJ Seal ; Ebsco Academic Search ; Essential Science Indicators ; Fees ; SCOPUS ; Science Citation Index Expanded ; Web of Science Core Collection

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