Extending Veteran Participation in the Validation of the SCI-QOL/CAT

In 2004, as part of a National Institutes of Health (NIH) initiative, Northwestern University (NWU) was awarded a five-year multicenter cooperative group award to develop and validate a Patient-Reported Outcomes Measurement Information System (PROMIS; (UOI AR 052177-02). At the same time, the National Institute of Neurological Disorders and Stroke (NINDS) issued a contract to Northwestern University to develop and validate a tool for neurological disorders (Neuro-Quality Of Life Study). The Neuro- Quality Of Life Study does not include persons with spinal cord injury. In 2008, working closely with members of the Neuro- Quality Of Life Study team at Northwestern, Dr. David Tulsky, Rehabilitations Outcomes Center (ROC), was awarded funding from two agencies of the NIH: NINDS and the National Center for Medical Rehabilitation Research (NCMRR) to develop a SCI­ specific patient reported outcomes measurement tool (SCI­ QOL(Spinal Cord Injury-Quality Of Life)) for non-Veterans. In 2012, Dr. Ann Spungen, JJPVAMC, was awarded funding by the VA Rehabilitation Research and Development Service to add Veterans with spinal cord injury to the Spinal Cord Injury-Quality Of Life project with Dr. Tulsky. The PROMIS (able-bodied individuals), Neuro-QOL (persons with neurological disorders) and Spinal Cord Injury-Quality Of Life (no-Veterans with spinal cord injury), and VET Spinal Cord Injury-Quality Of Life (Veterans with spinal cord injury) are branches of the original PROMIS tool. The psychometric analyses and databases are housed in the Assessment center of Northwestern University. Of note, Dr. David Victorson is a member of the team at Northwestern University and is part of the Vet Spinal Cord Injury-Quality Of Life project. The development of SCI-QOL is a multi-agency (NINDS, NIDRR, and NCMRR) funded project with Northwestern University and ROC; now the VA has added their funding effort to this cause with the VET SCI-QOL. Only, Northwestern University can perform this work. Dr. Ann Spungen received this VA RR&D funding (# B7566-R) to add our veteran SCI population to the validation of these measurements such that veterans with SCI may benefit from this quality of life assessment tool.