Developing a spinal cord injury research strategy using a structured process of evidence review and stakeholder dialogue. Part I: rapid review of SCI prioritisation literature

Abstract

Study design: This is a rapid evidence review. Objectives: The objective of this study was to gain an overview of the volume, nature and findings of studies regarding priorities for spinal cord injury (SCI) research. Setting: A worldwide literature search was conducted. Methods: Six medical literature databases and Google Scholar were searched for reviews in which the primary aim was to identify SCI research priorities. Results: Two systematic reviews were identified-one of quantitative and one of qualitative studies. The quality of the reviews was variable. Collectively, the reviews identified 31 primary studies; 24 quantitative studies totalling 5262 participants and 7 qualitative studies totalling 120 participants. Despite the difference in research paradigms, there was convergence in review findings in the areas of body impairments and relationships. The vast majority of literature within the reviews focused on the SCI patient perspective. Conclusion: The reviews inform specific research topics and highlight other important research considerations, most notably those pertaining to SCI patients' perspectives on quality of life, which may be of use in determining meaningful research outcome measures. The views of other SCI research stakeholders such as researchers, clinicians, policymakers, funders and carers would help shape a bigger picture of SCI research priorities, ultimately optimising research outputs and translation into clinical practice and health policy change. Review findings informed subsequent activities in developing a regional SCI research strategy, as described in two companion papers. INTRODUCTIONSpinal cord injury (SCI) affects many individuals across the world. The annual incidence of traumatic SCI is estimated to range between 12.1 and 57.8 per million worldwide, 1 and SCI rates vary between countries and across regions-in North America (39 per million), Western Europe (16 per million), Australia (15 per million) and in New Zealand (30-49 per million). 2,3 In Australia, this equates to around 285 new acute traumatic SCIs per year, predominantly from transportrelated accidents (46%) and falls (28%), with tetraplegia (53%) slightly more frequent than paraplegia and the majority of cases involving males, with a male to female injury ratio of 5.3:1. 4 Non-traumatic SCI adds to these figures; an Australian study reported an age-adjusted adult incidence rate of 26.3 cases per million per year. 5 SCI prevalence is estimated to be 10-12 000 traumatic and 8000 non-traumatic cases in Australia. 6,7 Sensorimotor and autonomic nervous system dysfunction following SCI results in a range of acute, rehabilitation and long-term healthcare challenges, including pressure injuries, disorders of muscle tone and bowel and bladder problems. 8 These sequelae have long-term effects on independence and psychological well-being post SCI. 9 Aside from the potentially devastating impact of traumatic SCI on physical function, social participation and quality of life, traumatic SCI carries a high financial cost, esti...

Developing a spinal cord injury research strategy using a structured process of evidence review and stakeholder dialogue. Part II: Background to a research strategy

“…In addition to the rapid review of evidence, 25 there were four key outputs from Phase 1 of the Research Strategy Forum: 1. A Research Strategy Roadmap that presents an overview of the major steps and outlines key planning questions--that is, the HOW of a research strategy; 2.…”

“…24 This paper describes the outcomes of Phase 1 of the NTRI Forum process-that is, defining the problem, then synthesising and summarising evidence from literature and consultations into a briefing document. Companion papers present a review of prioritisation literature that informed Phase 1 25 and the outcomes of Phase 2. 26 We certify that all applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during the course of this research.…”

Improving care standards for patients with spinal trauma combining a modified e-Delphi process and stakeholder interviews: a study protocol

“…Rapid review is becoming an increasingly favoured methodology14 to facilitate the appraisal and synthesis of evidence in a time efficient manner, especially when informing healthcare policy and practice decisions, with this technique recently reported in SCI 15. The authors have chosen a rapid review to identify the existing guidelines and to update evidence from latest literature reporting clinical research and systematic reviews.…”

Urinary tract infections, urologic surgery, and renal dysfunction in a contemporary cohort of traumatic spinal cord injured patients

“…Over 80% of patients with a SCI have abnormal lower urinary tract function, and even ambulatory patients with incomplete lesions often exhibit urodynamic abnormalities . The long‐term bladder complications associated with SCI are an important area of concern for patients and are closely linked to a patient's quality of life . Although the mortality associated with SCI bladder dysfunction has decreased, it has still been shown to be significantly higher than the general population …”