Needs of Persons with Spinal Cord Injury (SCI)

NCT04422769 | Completed

• 1 other identifier: 202005026
• Study Type: observational
• Target: 53
• Locations: 1 country
• Sites: 1

Brief Summary

Persons with spinal cord injury (PwSCI) are at a greater risk for major health conditions and poorer health outcomes than persons without spinal cord injury (SCI). They often experience a great deal of health needs both on a physiological level as well as a psychosocial level. PwSCI frequently require supports and services to be able to live independently within the community. These services and supports are sometimes difficult to access within the community when the country is operating under regular capacity, in current times with the global COVID-19 pandemic, the challenges for obtaining and accessing supports and services will become much greater. The proposed project aims to identify the specific needs during this time of crisis and to provide referrals and resources to ameliorate those needs by surveying PwSCI in the St. Louis region. The project also hopes to determine if these persons experience isolation during shelter at home orders. PwSCI, who the investigators serve or have served in the past, will be contacted via phone or e-mail once a month for six months and asked to complete a questionnaire that will allow the investigators to track the participant's needs during the COVID-19 pandemic.

Conditions

Spinal Cord Injuries

Outcome Measures

Primary Outcomes (1)

• NIH Toolbox Instrumental Support Survey - change in instrumental support

  Instrumental Support refers to the perception that people in one's social network are available to provide material or functional aid in completing daily tasks (such as making meals or providing transportation) if needed. This self-report measure for adults (ages 18 and above) is an 8-item calibrated scale.This study will use the measure to determine if people's instrumental support changes during a pandemic.

  Baseline, 3 month and 6 month

Secondary Outcomes (1)

• UCLA (University of California - Los Angeles) 3-item Loneliness Scale - change in social isolation

  Baseline, 3 month and 6 month

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

A sample of two hundred and fifty (n=250) persons with SCI will be recruited from the St. Louis, MO community. Many of these persons will be those who have participated in some of the investigators other research projects in the past. We also have collaborations with the Washington University Seating and Mobility Clinic and Paraquad, the local center for independent living.

You may qualify if:

• diagnosis of an SCI; are 18 years or older; live in the community in the Greater St. Louis area, and have the ability to understand English.

You may not qualify if:

• cognitive impairment that does not allow them to provide consent and/or ability to understand the questions posed in the survey

Sponsors & Collaborators

• Washington University School of Medicine: lead

Study Sites (1)

Washington University School of Medicine

St Louis, Missouri, 63108, United States

Location

Related Publications (8)

• Adnana Y, Mckenzie A, Miyahara M. Self-efficacy for quad rugby skills and activities of daily living. Adapted Physical Activity Quarterly. 2001; 18: 90-101.

  BACKGROUND

• Blauwet C, Willick SE. The Paralympic Movement: using sports to promote health, disability rights, and social integration for athletes with disabilities. PM R. 2012 Nov;4(11):851-6. doi: 10.1016/j.pmrj.2012.08.015.

  PMID: 23174549 BACKGROUND

• Slater D, Meade MA. Participation in recreation and sports for persons with spinal cord injury: review and recommendations. NeuroRehabilitation. 2004;19(2):121-9.

  PMID: 15201471 BACKGROUND

• U.S. Department of Health and Human Services. (2000). Healthy people 2010: Understanding and improving health. 2nd ed. Washington, DC: U.S. Government Printing Office.

  BACKGROUND

• Jacobs PL, Beekhuizen KS. (2005). Appraisal of physiological fitness in persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 10(4):32-50.

  BACKGROUND

• Keyser RE, Rasch EK, Finley M, Rodgers MM. Improved upper-body endurance following a 12-week home exercise program for manual wheelchair users. J Rehabil Res Dev. 2003 Nov-Dec;40(6):501-10. doi: 10.1682/jrrd.2003.11.0501.

  PMID: 15077662 BACKGROUND

• Post MW, van Leeuwen CM. Psychosocial issues in spinal cord injury: a review. Spinal Cord. 2012 May;50(5):382-9. doi: 10.1038/sc.2011.182. Epub 2012 Jan 24.

  PMID: 22270190 BACKGROUND

• Middleton J, Tran Y, Craig A. Relationship between quality of life and self-efficacy in persons with spinal cord injuries. Arch Phys Med Rehabil. 2007 Dec;88(12):1643-8. doi: 10.1016/j.apmr.2007.09.001.

  PMID: 18047880 BACKGROUND

MeSH Terms

Conditions

Spinal Cord Injuries

Condition Hierarchy (Ancestors)

Spinal Cord Diseases; Central Nervous System Diseases; Nervous System Diseases; Trauma, Nervous System; Wounds and Injuries

Study Officials

• Kerri A Morgan, PhD

  Washington University School of Medicine

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor of Occupational Therapy and Neurology

Study Record Dates

• First Submitted: June 4, 2020
• First Posted: June 9, 2020
• Study Start: May 22, 2020
• Primary Completion: April 15, 2021
• Study Completion: April 15, 2021
• Last Updated: March 28, 2025

Record last verified: 2021-05

Locations

US (1)