Trends, Challenges, and Opportunities Regarding Research in Non-traumatic Spinal Cord Dysfunction

Abstract

Spinal cord dysfunction (SCDys) is caused by heterogeneous health conditions, and the incidence is increasing. Despite the growing interest in rehabilitation research for SCDys, research into SCDys faces many challenges. The objective of this project was to perform a clinical review of changes in SCDys research over the last 4 decades; identify challenges to conducting research in SCDys; and propose opportunities for improving research in SCDys. A triangulation approach was used for obtaining evidence: literature search (January 2017) using MEDLINE and Embase databases for publications in English (1974-2016) regarding SCDys; workshop discussions at the International Spinal Cord Society annual meeting, September 16, 2016, Vienna, Austria; and our collective expertise in SCDys clinical rehabilitation research. There has been a substantial increase in publications on SCDys over the 4 decades, from 1,825 in 1974-1983 to 11,887 in the decade 2004-2013, along with an improvement in research methodology. Numerous challenges to research in SCDys rehabilitation were grouped into the following themes: (a) identification of cases; (b) study design and data collection; and (c) funding, preclinical, and international research. Opportunities for addressing these were identified. The increase in scientific publications on SCDys highlights the importance of this heterogeneous group among the research community. The overall lack of good quality epidemiological studies regarding incidence, prevalence, and survival in these patients serves as a benchmark for guiding improvements to inform evidence-based care and policy.

All-cause and cause-specific mortality following non-traumatic spinal cord injury: evidence from a population-based cohort study in Switzerland

“…This study is one of the first population-based studies of relative mortality following NTSCI. The study design targeted individuals that were admitted for first rehabilitation, therefore the portion of individuals that never receive specialized rehabilitation or treatment are less represented [3,5], which can limit the generalizability of results to the entire population with NTSCI. Thus, SMRs of individuals not admitted to specialized care may be even higher.…”

“…Although epidemiological evidence for NTSCI is limited, the WHO recently summarized a report which estimated the worldwide incidence to vary between 12 and 76 per million population [2]. However, critical epidemiological indicators, instrumental to informing long-term patient management and health policy-including mortality-remain scarce for NTSCI [3]. While most of the currently available literature focuses on traumatic SCI (TSCI) [4,5], this evidence is often not transposable to NTSCI due to the distinct, often age-related pathologies associated with NTSCI.…”

“…While most of the currently available literature focuses on traumatic SCI (TSCI) [4,5], this evidence is often not transposable to NTSCI due to the distinct, often age-related pathologies associated with NTSCI. This lack of evidence renders evidence-based clinical decisions, prognosis, patient education, and resource allocation for the NTSCI population particularly challenging [3,6,7]. Considering the etiologically heterogeneous and elderly composition of the NTSCI population [1,3], identification of subgroups suitable for targeted interventions are essential for minimizing within-group mortality differentials and improvement of the overall health system [8].…”

“…This lack of evidence renders evidence-based clinical decisions, prognosis, patient education, and resource allocation for the NTSCI population particularly challenging [3,6,7]. Considering the etiologically heterogeneous and elderly composition of the NTSCI population [1,3], identification of subgroups suitable for targeted interventions are essential for minimizing within-group mortality differentials and improvement of the overall health system [8]. All-cause and cause-specific mortality estimates allow for the investigation of the burden of mortality associated to NTSCI by highlighting risk factors that contribute to an increased risk of mortality and specific cause of death (CoD).…”

Describing the current state of post-rehabilitation health system surveillance in Ontario – an invited review

“…There have been several recent efforts to address ICD coding for patients with non-traumatic SCI and facilitate case finding and health surveillance for this population nationally and internationally. [14][15][16] This acute post-operative phase of injury management is associated with a Canadian median rehabilitation onset of 26-30 days for those with traumatic injury prior to rehabilitation admission to a tertiary rehabilitation facility. 17,18 Recently published examinations from multiple sites across Canada involving >1000 individuals with traumatic SCI, revealed that median rehabilitation length of stay, is 78-79 days (Interquartile Range 64-68 days).…”