Das Gesundheitswesen , Thieme Verlag Heft 4-2023, Jahrgang 85) ISSN 1439-4421 Seite(n) 250 bis 257 DOI: 10.1055/a-1829-6781 CareLit-Dokument-Nr: 318600 |
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Zusammenfassung Ziel der Arbeit Menschen mit Paraplegie, Angehörige und professionell Versorgende können mit ihrer Erfahrung und praktischen Kenntnissen zur Entwicklung patientenorientierter, versorgungsrelevanter Forschungsfragen beitragen. Um sie in die Entwicklung einer Forschungsagenda einzubeziehen, hat die James Lind Alliance (JLA) einen etablierten Ansatz entwickelt. Das Ziel dieser Studie ist die Entwicklung einer Forschungsagenda zu Paraplegie infolge einer traumatischen Querschnittlähmung, in Anlehnung an diesen Ansatz. Methodik Es wurden vier aufeinander aufbauende Online-Befragungen unter Menschen mit einer traumatisch bedingten Paraplegie, ihren Angehörigen und professionell Versorgenden durchgeführt. In der ersten haben die Teilnehmenden aus ihrer Sicht unbeantwortete Fragen frei formuliert. Diese wurden zusammengefasst und dahingehend geprüft, ob sie bereits durch Forschung beantwortbar sind. Die unbeantworteten Fragen wurden in weiteren Befragungen schrittweise priorisiert: In der zweiten wurden sie auf einer fünfstufigen Rating-Skala (1–5) hinsichtlich ihrer Relevanz bewertet, um eine Shortlist aus den Fragen zu entwickeln, die mit einem Mittelwert von über 4 bewertet wurden. In der dritten Umfrage wurden daraus die Top 10 bestimmt, deren Rangordnung in der vierten Befragung ermittelt wurde. Ergebnisse Es wurden 38 unbeantwortete Forschungsfragen identifiziert (1. Befragung; n=52). Davon wurden 26 Fragen als wichtig bewertet (2. Befragung; n=53), aus denen 10 Fragen ausgewählt (3. Befragung; n=17) und in eine Rangordnung gebracht wurden (4. Befragung; n=12). Vier Prioritäten betreffen Behandlungsmöglichkeiten der Querschnittlähmung oder damit verbundener Gesundheitsprobleme, drei die Gestaltung der Gesundheitsversorgung im Bereich der Hilfsmittel und der Implementierung von Forschung, zwei adressieren Patientenfaktoren, die zur Verbesserung der eigenen Situation beitragen und eine die Erforschung des Krankheitsverlaufs. Schlussfolgerung Es wurden neun Fragestellungen priorisiert, die auf Forschung zur Verbesserung der Lebens- und Versorgungssituation mit einer Querschnittlähmung abzielen, während eine Frage die Heilung adressiert. Die priorisierten Fragen sollten durch Forschung aufgegriffen werden, damit Problemstellungen adressiert werden, die für Betroffene, Angehörige und professionell Versorgende relevant sind. Abstract Background Objective With expertise based on experience, paraplegics, their relatives and health care professionals can contribute to the development of research questions relevant for those affected and those in health care practice. For this purpose, the James Lind Alliance (JLA) has provided a methodological approach. The aim of this study was to develop a research agenda for paraplegia resulting from traumatic spinal cord injury with an adapted JLA approach. Methods Four consecutive online surveys of people with paraplegia caused by traumatic spinal cord injury, their relatives and caregivers were conducted. In the first survey, the respondents freely formulated research questions unanswered from their point of view. These were synthesized and checked to see if they can already be answered by available evidence. The unresolved questions were prioritized stepwise in the subsequent surveys. In the second survey, the relevance of questions was rated on a five-point rating scale (1–5). Questions with a mean value of 4 or higher were taken up in the third survey, in which the 10 most relevant questions were determined. These were ranked in the fourth survey as a top-10 list. Results Based on the first survey (n=52), 38 unresolved research questions were identified. Of these, 26 questions were rated as important (2nd survey; n=53), from which 10 questions were selected (3rd survey; n=17) and ranked (4th survey; n=12) as a top-10 list. Four prioritized questions related to treatment of spinal cord injury or associated health issues, three to aspects of the health care system with regard to assistive devices and the implementation of new therapies, two to possibilities of those affected to improve their own situation, and one to research on the course of disease. Conclusions Nine priorities focus on research that could help improve the life and health care situation of paraplegic patients and one on curative treatment. The prioritized questions should be taken up by researchers and research funders for the benefit of patients and to help health care providers. For some priorities, a need for research was consistently identified in present guidelines or systematic reviews. Schlüsselwörter Partizipative Forschung - Querschnittlähmung - James Lind Alliance - Patientenorientierung - Forschungsprioritäten Key words participatory research - spinal cord injury - James Lind Alliance - patient orientation - research priorities Zusätzliches Material Zusätzliches Material Received: 07 September 2021 Accepted: 23 March 2022 09 September 2022 © 2022. The Author(s). 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