Aging with Spinal Cord Injury/Disease: Recommendations for Future Research

1. Aging with Spinal Cord Injury/Disease: Recommendations for Future Research Denise Tate PhD1, Susan Charlifue,PhD², Suzanne Groah MD, MPH3 Martin Forchheimer, MPP1, Ivan Molton PhD4, Mark Jensen PhD4, Anthony Chiodo MD1, James Krause PhD51University of Michigan, Ann Arbor, MI; 2Craig Hospital, Englewood, CO; 3National Rehabilitation Hospital, Washington, DC; 4Dept of Rehabilitation Medicine, University of Washington; 5Medical University of South Carolina, Charleston, SC Recommendations Introduction Results The SCI/D population is becoming more heterogeneous with (1) some groups with SCI/D surviving longer than before due to medical advances; (2) older individuals diagnosed with SCI/D having more concomitant associated co-morbid conditions and; (3) more elderly and frail individuals sustaining SCI due to trauma. Aging with SCI/D is quite different for those with different impairments, yet research about complications associated with aging with a spinal cord condition is virtually non-existent. In 2008, a group of researchers funded by the National Institute on Disability and Rehabilitation Research (NIDRR) formed an Aging Special Interest Group (SIG). The recommendations listed below reflect those expressed by SCI Aging SIG members and those discussed during the State of the Science in SCI Rehabilitation 2011 meeting. In order to advance SCI aging research, we must develop conceptual models of research including standard nomenclature and data sharing agreements, facilitate interdisciplinary research including national and international partnerships, and promote inter-agency collaborations. Three papers were recently published on this topic by members of this SCI Aging SIG, discussing findings and recommendations for aging with disability research. • SCI/D AGING SIG and Other Related Publications • Groah SL, Charlifue S, Tate D, Jensen MP, Molton IR, Forchheimer M, Krause JS, Lammertse DP, Campbell M. Spinal cord injury and aging: Challenges and recommendations for future research. Am J Phys Med Rehabil 2012, 91(1):80-93. • Jensen MP, Molton IR, Groah SL, Campbell M, Charlifue S, Chiodo A, Forchheimer M, KrauseJS, Tate D. Secondary health conditions individuals aging with SCI: Terminology, concepts and analytic approaches. Spinal Cord 2012, 50, 373-378. • DeVivo MJ. Epidemiology of traumatic spinal cord injury: trends and future implications. Spinal Cord 2012, 50, 365-372.   SCI AGING SIG Recommendations for Research Develop a comprehensive strategic research plan for aging with SCI across the lifespan which integrates federal agencies priorities for improving health outcomes, participation, community living and overall quality of life. Develop guiding principles for the use of proper and consistent nomenclature to conduct aging research and improved analytical strategies. Solicit studies focusing on the identification of risk clusters to diagnose secondary conditions and interventions designed to promote prevention and treatment of these conditions. Promote research on health behaviors, life style factors and self-management skills models of care. Track changes in outcomes and effects on QOL with the use of new and existing databases which allow for longitudinal follow-up studies across age cohorts. Expand support for efficacy studies on interventions for individuals aging with SCI and related outcomes through the lifespan. Support research focusing on the application of clinical care guidelines designed to treat secondary conditions for people aging with SCI. Support knowledge translation efforts so that research can be more easily adopted into practice. Support a research agenda setting summitwhich will bring together experts on aging research from various federal agencies, policy makers, providers and individuals with SCI, focusing on the biology of aging as well as on behavioral and psychosocial/environmental factors which impact healthy aging with SCI. Support funding for aging with SCI specific research protocols as well as larger collaborative aging with SCI studies across agencies. . Methods Conclusions The Aging SIG’s mission is to facilitate an increase in knowledge regarding the effects of aging and long-term disability on the health, participation and quality of life of individuals with SCI/D by: 1) Summarizing current knowledge and its dissemination via publications and presentations at conferences; 2) Advocating for increased research investments in this area; and 3) Conducting rigorous research aimed at advancing knowledge of aging with SCI and strengthening the evidence base to improve rehabilitation practice and inform policy. Life expectancy is still lower for those with SCI/D than for the general population, varying by impairment level and completeness. SCI/D alters the trajectory of aging, affecting its rate and characteristics. There is a need for clarification of pertinent nomenclature with respect to terms such as secondary conditions, medical co-morbidities and associated medical conditions. Inconsistencies in terminology create barriers to the comparison of interventions to reduce and prevent health conditions among those aging with SCI/D. More longitudinal studies to examine these conditions adopting a life trajectory approach are needed to determine risk factors involved in maintaining health and reducing early mortality among those with SCI/D. Research must address the different factors that when combined assess the impact of aging, including chronological age and duration of impairment. Courtesy of Andrew Sacks ~ SaxPix Support: Funded by the US Department of Education, Office of Special Education and Rehabilitative Services (OSERS), National Institute on Disability and Rehabilitation Research (NIDRR) SCI Model System grant #H133N110002. For Contact Information: Denise G. Tate, Ph.D., dgtate@umich.edu