Levelink Michael, Voigt-Barbarowicz Mona, Ahlers Carlotta, Brütt Anna Levke
Department für Versorgungsforschung, Carl von Ossietzky Universitat Oldenburg, Oldenburg, Germany.
Forschungspartnerin.
Gesundheitswesen. 2023 Apr;85(4):250-257. doi: 10.1055/a-1829-6781. Epub 2022 Sep 9.
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.
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.
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.
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.
基于经验的专业知识，截瘫患者、他们的亲属以及医疗保健专业人员能够为提出与患者及医疗保健实践相关的研究问题做出贡献。为此，詹姆斯·林德联盟（JLA）提供了一种方法。本研究的目的是采用改良的JLA方法制定创伤性脊髓损伤所致截瘫的研究议程。
对创伤性脊髓损伤所致截瘫患者、他们的亲属及护理人员进行了连续四次在线调查。在第一次调查中，受访者自由提出他们认为未得到解答的研究问题。对这些问题进行综合整理，并检查是否已有现有证据可以解答。在后续调查中逐步对未解决的问题进行排序。在第二次调查中，根据五分制评分量表（1 - 5分）对问题的相关性进行评分。平均值为4分或更高的问题进入第三次调查，在第三次调查中确定了10个最相关的问题。在第四次调查中，将这些问题排列成十大问题清单。
基于第一次调查（n = 52），确定了38个未解决的研究问题。其中，26个问题被评为重要问题（第二次调查；n = 53），从中选出10个问题（第三次调查；n = 17）并进行排序（第四次调查；n = 12），形成十大问题清单。四个优先问题涉及脊髓损伤的治疗或相关健康问题，三个涉及医疗保健系统在辅助设备和新疗法实施方面的问题，两个涉及患者改善自身状况的可能性，一个涉及疾病进程的研究。
九个优先事项聚焦于有助于改善截瘫患者生活和医疗保健状况的研究，一个聚焦于治愈性治疗。研究人员和研究资助者应关注这些优先问题，以造福患者并帮助医疗保健提供者。对于一些优先事项，在当前指南或系统评价中一直确定存在研究需求。
