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Rehabilitation Dataset Directory: Dataset Profile
Dataset: Spinal Cord Injury Rehab (SCIRehab)
| Basic Information | |
|---|---|
| Dataset Full Name | Spinal Cord Injury Rehab |
| Dataset Acronym | SCIRehab |
| Summary | The SCIRehab is a 5-year, multi-center study based on Practice Based Evidence (PBE) approach which collects data related to inpatient rehabilitation process of care and outcomes for individuals with Spinal Cord Injury (SCI). The SCIRehab project collects detail information on specific intervention, duration of therapy, patient participation, caregiver role, social participation, and patient-centered outcomes including functional status and quality of life. The data includes detailed information on discipline-specific rehabilitation interventions which are not recorded adequately by the clinicians in normal documentation during inpatient rehabilitation process. Six major US inpatient rehabilitation hospitals specializing in providing rehabilitation services for individuals with SCI were involved in collaborative research. They report point of care data of a patient with SCI and rehabilitation service outcomes to Craig Hospital in Englewood, Colorado. |
| Key Terms | Spinal Cord Injury, Rehabilitation Outcomes, Practice Based Evidence, Nursing education, Occupational therapy, Physical therapy, Speech therapy, Therapeutic Recreation, Psychology, Social work/case management, Physiatry |
| Study Design | Longitudinal |
| Data Type(s) |
Administrative Clinical Survey |
| Sponsoring Agency/Entity | Department of Health and Human Services (HHS): National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) | Health Conditions/Disability Measures |
| Health Condition(s) | Spinal cord injury (SCI), |
| Disability Measures | Functional limitations (ADLs and/or IADLs) |
Measures/Outcomes of Interest |
| Topics | Patient and injury characteristics. Detailed information about the rehabilitation process and intensity of therapy during inpatient rehabilitation by each discipline: physical therapy, occupational therapy, therapeutic recreation, speech-language pathology, psychology, nursing, and social work/case management. Individual and Group Therapy Co-treatment with other disciplines, Duration of therapy Family/Caregiver involvement. Missed therapy and factors that impact rehabilitation sessions. Patient participation in Physical Therapy and Occupational therapy sessions.
The level of assistance needed in performing activities of daily living: Functional Independence Measure (FIM). A detailed description of functional status by a subset of the skills. Detailed information on the burden of care by distinguishing “total assistance of more than one person” from “total assistance of one person.” Admission and discharge function, Discharge destination, rehospitalization in the first year, variables related to community participation, work or school attendance, depression, the presence of pressure ulcers, usage of assistive technology, and life satisfaction at one year post-injury. Outcomes: neurologic recovery; functional independence; discharge to home; medical complications and rehospitalizations in the first year after injury; and return to productive activity, extent of societal participation, and perceived quality of life reported at the first anniversary of injury. |
Sample |
| Sample Population | Patients older than 12 years of age with new traumatic SCI at one of 6 participating SCI centers: Craig Hospital, Englewood, CO Carolinas Rehabilitation, Charlotte, NC The Mount Sinai Medical Center, New York, NY MedStar National Rehabilitation Hospital, Washington, DC Rehabilitation Institute of Chicago, Chicago, IL Shepherd Center, Atlanta, GA |
| Sample Size/Notes | 1,376 patients |
| Unit of Observation | Individual patient and individual treatments |
| Continent(s) | North America |
| Countries | United States |
| Geographic Coverage | SCI patients of the 6 SCI center collaborators:
|
| Geographic Specificity | N/A | Data Collection |
| Data Collection Mode | Extensive patient, injury clinical data and other medical treatment abstracted from medical records. Detailed Point-Of-Care (POC) documentation was designed to systematically record treatments administered each session, shift, or day. Patient interviews. |
| Years Collected | 2008 to 2011 Note: 2011 to 2016 5 year post injury follow-up (as of 10/2016 follow-up data not yet available) |
| Data Collection Frequency | Admission, during inpatient rehabilitation, discharge, and Outcome data were abstracted from medical records and Patient interviews at 6 and 12 months post-injury. | Strengths and Limitations |
| Strengths | Very comprehensive longitudinal SCI database. Contains detailed information on post-acute rehabilitation services, data collection designed around a comprehensive clinical taxonomy for SCI research in 7 therapeutic intervention categories, captures variation in therapy, timing and patient involvement, prospective follow-up information, good case identification, includes patient interview information. |
| Limitations | Small sample size: participants limited to patients in six inpatient SCI rehabilitation facilities. Very limited technical documentation available (as of 10/2016). | Data Details |
| Primary Website |
Data documentation archived on ADDEP at ICPSR: https://www.icpsr.umich.edu/icpsrweb/ADDEP/studies/36724 |
| Data Access |
Data archived on ADDEP at ICPSR: |
| Data Access Requirements | Data Use agreement, No cost |
| Summary Tables/Reports | N/A |
| Data Components | 8 Files:
|
Selected Papers |
| Other Papers | Whiteneck G, Dijkers M, Gassaway J, Lammertse, DP. Classifications and Quantification of Spinal Cord Injury Rehabilitation Treatments. J Spinal Cord Med. 2009; 32(3): 249-250. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2718826/ Whiteneck G, Dijkers M, Gassaway J, Jha A. SCIRehab: New approach to study the content and outcomes of spinal cord injury rehabilitation. J Spinal Cord Med. 2009; 32(3): 251-259. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2718827/ Gassaway J, Whiteneck G, Dijkers M. SCIRehab: Clinical taxonomy development and application in spinal cord injury rehabilitation research. J Spinal Cord Med. 2009; 32(3): 260-269. |
| Technical | Data Documentation (ICPSR): https://www.icpsr.umich.edu/icpsrweb/ADDEP/studies/36724/datadocumentation# SciRehab papers: |
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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).
Other CLDR supported resources and collaborative opportunities:
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Acknowledgements: This tool was developed through the efforts of William Erickson and Arun Karpur, and web designers Jason Criss and Jeff Trondsen at Cornell University. Many thanks to graduate students Kyoung Jo Oh and Yeong Joon Yoon who developed much of the content used in this tool.
For questions or comments please contact disabilitystatistics@cornell.edu