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@ARTICLE{Rackoll:282579,
      author       = {Rackoll, Torsten and Ketzer, André and Peppmeier, Bernd
                      and Engel, Anna and Endres, Matthias and Nave, Alexander H},
      title        = {{P}atient perspective and research prioritization in
                      rehabilitation after stroke - results from an online survey
                      in {G}ermany.},
      journal      = {BMC health services research},
      volume       = {25},
      number       = {1},
      issn         = {1472-6963},
      address      = {London},
      publisher    = {BioMed Central},
      reportid     = {DZNE-2025-01339},
      pages        = {1564},
      year         = {2025},
      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.},
      keywords     = {Humans / Male / Female / Germany / Stroke Rehabilitation /
                      Aged / Cross-Sectional Studies / Middle Aged / Adult /
                      Surveys and Questionnaires / Caregivers: psychology / Aged,
                      80 and over / Stroke: psychology / Internet / Rehabilitation
                      Research / Caregivers (Other) / Germany (Other) / Lived
                      experience (Other) / Patient engagement (Other) /
                      Rehabilitation (Other) / Research priorities (Other) /
                      Stroke (Other) / Survey (Other)},
      cin          = {AG Endres},
      ddc          = {610},
      cid          = {I:(DE-2719)1811005},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:41310672},
      pmc          = {pmc:PMC12670788},
      doi          = {10.1186/s12913-025-13824-0},
      url          = {https://pub.dzne.de/record/282579},
}