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.