Showing 1 – 8 of 8 results.
Curated
Simple Crosstabs
Assistive Technology and Functional Outcomes Following Spinal Cord Injury, United States, 2019-2020, 2021-2022 (ICPSR 39627)
Released/updated on: 2026-07-21
Geographic coverage: North Carolina, Oregon, Vermont, Indiana, Oklahoma, Tennessee, Maine, Alabama, Arkansas, Utah, Washington, South Carolina, Nebraska, Massachusetts, Colorado, Missouri, North Dakota, Wisconsin, Arizona, Nevada, Montana, Kentucky, South Dakota, Minnesota, California, Florida, New Jersey, Michigan, Pennsylvania, Mississippi, Iowa, New Mexico, Illinois, Texas, Connecticut, New Hampshire, Louisiana, Ohio, Georgia, Virginia, Maryland
Time period: 2021-01-01--2022-12-31, 2019-01-01--2020-12-31
This data collection is split into two parts, the quantitative and qualitative studies, both of which examine the uses of assistive technologies for individuals with tetraplegia. The studies were led by Principal Investigator Kimberely R. Monden (University of Minnesota) and Co-Investigators Angela M. Hanks Philippus (University of Minnesota) and Susan Charlifue (Craig Hospital).
The quantitative study examined the characteristics and psychosocial impact of assistive technology (AT) use among adults with tetraplegia. The study sample includes adult individuals living with tetraplegia who utilize a range of assistive technologies to support daily functioning. Data were collected through structured surveys and interviews between September 1st, 2021, and November 1st, 2022, focusing on demographic information, injury characteristics, types of assistive technologies used, and psychosocial outcomes such as autonomy, satisfaction, and quality of life. Quantitative measures include standardized psychosocial scales, while qualitative responses provide contextual depth regarding personal experiences with AT. This dataset offers valuable insights into how specific AT devices contribute to functional independence and emotional well-being in this population, with implications for rehabilitation practices, policy development, and future innovations in assistive technology design.
The qualitative study explored perceived barriers and facilitators to access and utilization of assistive technology (AT) among Veterans and civilians living with tetraplegia. The study team also explored differences in access to and utilization of AT between civilians and Veterans. Facilitators of AT utilization and access included being connected to resources, trial-and-error, and knowledge gained from peers. Barriers to AT use included cost of devices, a general lack of awareness of resources, and requirements for eligibility; the latter two themes were endorsed solely by Veteran participants. Benefits of AT included increased independence, participation, productivity, quality of life, and safety. Findings highlight key facilitators of AT procurement and use, barriers that contribute to underutilization of AT, and benefits experienced as a result of using AT.
Self-published
Aging 50 (ICPSR 250166)
Released/updated on: 2026-06-24
Time period: 2023-09-01--2026-05-31
This study examines aging, community participation, health, function, social support, employment, and quality of life among adults with traumatic spinal cord injury (SCI) living in the community. The study builds on the SCI Longitudinal Aging Study, which began in 1973 and has followed participants over multiple decades. The project focused on how community participation changes as people age with SCI, including among individuals who have lived 30, 40, 50, or more years after injury.
The study included longitudinal follow-up of existing participants, enrollment of additional cross-sectional cohorts, and qualitative interviews and focus groups with long-term SCI survivors. The major research questions addressed the natural course of participation and satisfaction with participation after SCI; the role of injury severity, functional status, relationship status, social support, peer support, coping strategies, race and ethnicity, health status, employment, and quality of life; and the barriers, facilitators, and life events associated with maintaining participation while aging with SCI.
Participants were adults with traumatic SCI and residual impairment who were at least one year post-injury and age 18 years or older at enrollment. Study samples were drawn from Midwestern and Southeastern United States cohorts, including participants from urban and rural settings. The data cover topics including demographic characteristics, injury characteristics, years since injury, activities of daily living, community participation, satisfaction with participation, social and emotional support, instrumental support, social isolation, relationship status, employment, health conditions, secondary health conditions, life satisfaction, and quality of life.
Self-published
Validation of MENTOR Tool to Describe Bowel Dysfunction in Inpatient Rehabilitation Setting (ICPSR 246071)
Released/updated on: 2026-05-05
Geographic coverage: United States
Time period: 2021-09-01--2026-08-31
Objective
People living with spinal cord injury (SCI) rate neurogenic bowel dysfunction (NBD) as one of the biggest daily challenges. Currently, no validated clinical decision-making tool exists to guide NBD management during the acute/subacute period following SCI, a time highlighted by frequent complications and rapid clinical changes. Previously, the Monitoring Efficacy of NBD Treatment On Response (MENTOR) tool was developed to facilitate shared decision making between the clinician and the person living with chronic SCI in bowel management. The objective of this study was to assess MENTOR tool validity in an acute/subacute setting.
Design/Methods
Prior to discharge from inpatient rehabilitation, the MENTOR tool was completed by a study member via interview, followed immediately by a clinical evaluation by a study clinician who was masked to the MENTOR results. Concordance between the MENTOR tool and the clinical evaluation was assessed using percent agreement calculations.
Results
Two hundred forty participants were enrolled. Significant differences were observed in relation to demographic and clinical factors between various SCI categories and clinical sites. Overall concordance between MENTOR and clinical recommendations was 40.6%. Regardless of factors such as satisfaction score, presence of special attention symptoms, or MENTOR results, No Change was the most common clinician evaluation.
Conclusions
Similar concordance for using the MENTOR tool as a clinical decision-making tool in the acute/subacute population as compared to the chronic population was not demonstrated. However, the MENTOR tool may be useful as a screening tool to determine whether a clinician assessment is required.
Self-published
RERC on Mobile Rehabilitation: Survey on Clinician Perspectives on Patient Adherence to Home Exercise Programs (ICPSR 247026)
Released/updated on: 2026-03-19
Geographic coverage: United States
Time period: 2022-04-26--2022-09-26
This project was undertaken by the clinical research team at Shepherd Center to understand the perceptions and strategies employed by physical, occupational and speech therapists when prescribing and tracking adherence to home exercise programs by their patients with chronic disabling conditions. Rehabilitation therapy professionals treating with community dwelling individuals with traumatic injury (brain injury and spinal cord injury) and progressive diseases (e.g., multiple sclerosis) on an outpatient basis were recruited to participate in this study. Rehabilitation has been shown to improve recovery, enhance independence, and contribute to life quality. A common and often preferred option in service delivery is to supplement in-clinic interventions with home-based exercises and other therapeutic activities that support rehabilitation goals. However, levels of adherence to home-based therapies are difficult to measure and, therefore, the benefits are often difficult to determine. Furthermore, there are only limited guidelines for proper dosing of home exercises for patients with chronic disabling conditions leaving clinical therapy professionals to rely on their own intuition and individual strategies when making prescriptions.Purpose: This survey is intended to discover: 1) clinician expectations for patient adherence to home-based therapeutic activities, 2) how these expectations might influence prescribing practices, and 3) distinguishing factors that contribute to expectations of high versus low adherence. Data uploaded: The data uploaded to the ICPSR repository comprise all validated responses.
Self-published
Harnessing social networks to personalize sensor-driven, just-in-time physical activity interventions for individuals with spinal cord injury (ICPSR 210421)
Released/updated on: 2024-11-07
Geographic coverage: United States
Time period: 2021-01-01--2021-12-31
The goal of this project is to conduct participatory design process with individuals with spinal cord injury (SCI) and their peers (friends or family members) to extend a pilot just-in-time adaptive intervention (JITAI) into a socially engaging JITAI system that can be deployed in the community. Just-in-time adaptive intervention (JITAI) systems are a subgroup of smartphone-based technology interventions now being evaluated which may improve health-related outcomes in individuals with disability. JITAI systems automatically detect physical activities (PAs) from wearable sensors and provide near-real-time feedback to promote health and wellness. However, these JITAI technologies are being developed without guidelines on how to make them engaging specifically for people with disabilities. People with disabilities such as individuals with SCI who use manual wheelchairs for mobility must overcome significant physiological and environmental barriers to participate in PA interventions in their communities. Thus, JITAIs that target the general population may not be appropriate for some populations with disability without significant design modifications. Outcomes of this project include generating new knowledge about individual and interpersonal needs for JITAI systems in individuals with SCI who use manual wheelchairs.
Curated
Restricted
Retraining Walking Over Ground in a Powered Exoskeleton After Spinal Cord Injury, Edmonton, Alberta, 2014-2018 (ICPSR 37983)
Released/updated on: 2021-04-29
Geographic coverage: Canada, Alberta, Edmonton
Time period: 2014-01-01--2018-12-31
This was a mixed-methods study to determine quantitative and qualitative outcomes in a cohort of individuals with chronic, spinal cord injury, who learned to use the ReWalk exoskeleton to walk over ground. Researchers determined the training dosage required for walking proficiency, the sensory and motor changes in the nervous system with the training, and the perspectives of the participants with respect to both the training and the device. It was a prospective cohort study. Measures were taken before, during, immediately after training, and 2-3 months after training was completed.
Self-published
Pressure Ulcer Prevention Study (ICPSR 100595)
Released/updated on: 2019-10-04
Geographic coverage: Los Angeles, California, United States
Time period: 2009-02-01--2014-02-28
Medically serious pressure ulcers (MSPrUs), a common complication of spinal cord injury (SCI), have devastating consequences on health and well-being and are extremely expensive to treat. The study objective was to test the efficacy of a lifestyle-based intervention designed to reduce the incidence of MSPrUs in an at-risk population of adults with SCI. We conducted a single-site, single-blind, randomized controlled trial (RCT), and a separate study wing involving a nonrandomized standard care control group. Recruitment and ongoing medical treatment were undertaken at Rancho Los Amigos National Rehabilitation Center, a large facility serving ethnically diverse, low income residents of Los Angeles County. Adults with SCI who had one or more prior MSPrUs over the past 2 years were enrolled and evaluated: N=82 in randomized intervention (RI), N=84 in randomized control (RC), N=66 in nonrandomized no-contact control (NCC). The Pressure Ulcer Prevention Program was a 12-month lifestyle-based treatment administered by healthcare professionals, largely via in-home visits and phone contacts. In the RI and RC groups, study nurses, blind to the participants’ condition assignments, conducted skin checks at baseline, 12 months and 24 months. In addition, trained interviewers (also blind to condition assignments) administered an assessment battery including questionnaires to measure health-related quality of life (Adapted RAND 36-Item Health Survey 1.0 (SF-36)), life satisfaction (Satisfaction with Life Scale (SWLS)), depression (Quasi-Adaptive Short Form for the Patient Reported Outcomes Measurement Information System (PROMIS) Version 1 Depression Item Bank), social support (Interpersonal Support Evaluation List (ISEL)), drug and alcohol use (Adapted Cut Down, Annoyed, Guilty, and Eye Opener (CAGE) Questionnaire), knowledge of ulcer prevention (Pressure Ulcer Knowledge Test), performance of preventive behaviors (Garber Procedure for Assessing Performance of Preventive Behaviors), and self-efficacy (Adapted Moorong Self Efficacy Scale), at study baseline, 12 months and 24 months. At baseline a set of eligibility and background variables were also measured. The NCC group received an abbreviated assessment including eligibility, background and social support, drug and alcohol use, and depression questionnaires, and were not followed beyond 12 months. The primary outcome for the study was the annualized MSPrU incidence rates at 12 and 24 months, based on: skin checks, quarterly phone interviews with participants, and review of medical charts and billing records. MSPrUs were classified as either serious (stages 3 and 4, unstageable and suspected deep tissue injury) or non-serious (stages 1 and 2). Secondary outcomes included number of surgeries and various quality-of-life measures assessed by the questionnaires.
Curated
Simple Crosstabs
Spinal Cord Injury Rehabilitation Study, United States, 2007-2010 (ICPSR 36724)
Released/updated on: 2018-05-03
Geographic coverage: New York City, North Carolina, District of Columbia, Charlotte, United States, Chicago, Atlanta, Illinois, Colorado, Denver, Georgia, New York (state)
Time period: 2007-01-01--2010-12-31
The SCIRehab study collected data about 1,376 people with spinal cord injury across 7 disciplines at 6 facilities in the United States between 2007 and 2009 and followed for one year (until 2010). The 7 disciplines included in the study are Physical Therapy, and Occupational Therapy, Psychology, Therapeutic Recreation, Social Work, Nursing, and Speech Language Pathology. These data include information gathered during 462,455 timed rehabilitation interventions in 282,999 treatment sessions provided by 1,094 clinicians. This study seeks to understand the relationship between rehabilitation and outcomes and used practice-based evidence methods to relate the details of the rehabilitation process to outcomes after controlling for individual demographic and injury characteristics. The 13 key outcomes include function and residence at discharge, 6 months and 1 year post injury, rehospitalization in the first year, 4 dimensions of societal participation, work or school attendance, depression, presence of pressure ulcers, and life satisfaction at 6 months and 1 year post injury.