Research priorities for traumatic spinal cord injury: contributions to improved quality of life and participation for those living with a spinal cord injury

Submission note: A thesis submitted in partial fulfilment of the requirements for the degree Doctor of Public Health to the School of Psychology and Public Health, College of Science, Health and Engineering, La Trobe University, Bundoora.

Spinal cord injury (SCI) caused by traumatic events can have a devastating impact on the function and quality of life (QoL) of an individual. SCI results in a significant financial cost to the community and represents a growing burden of disease. As resources for SCI research are limited and to ensure that resources are directed towards areas of greatest need, it is important to consider research priorities both of the researcher themselves and of individuals with SCI. With improved understanding of these priorities we can better ensure that research conducted is more relevant, more likely to translate into better care and more likely to lead to improvements in quality of life and participation for individuals with SCI. But what are the current research priorities for SCI? And how well do they reflect the needs of people with SCI? The aims of the present study were to investigate the relevance and appropriateness of current priorities for SCI research, in terms of potential for improving an individual's quality of life and participation within the community setting for the near future. This descriptive, cross-sectional study used two novel questionnaires, designed by the study investigator. As part of this survey the participants were asked to rate 42 research areas in regards to likelihood of leading to improvements in QoL and participation for the near future. These 20-minute questionnaires were distributed in the form of self-administered online surveys. Survey 1 was distributed to SCI researchers via SCI research organisations. Survey 2 was distributed to SCI consumers (i.e., individuals with SCI) via SCI advocacy and support organisations. A total of 48 responses were completed for Survey 1 and 94 responses for Survey 2. Overall, there was much consensus between the priorities of the SCI researchers and those of the SCI consumers. The most highly prioritised research themes by both groups were: Bladder and Bowel, Muscle and Joint, Mobility, and, the Spinal Cord and its related Structures. An important research priority mismatch was identified, pertaining to the research themes: Sex, Skin, and, Health Services, Systems and Policies. In order to improve the relevance of SCI research, the priorities of the SCI population must be better known and taken into account.