Needs of Persons with Spinal Cord Injury (SCI)

NCT ID: NCT04422769

Last Updated: 2025-03-28

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 53 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2020-05-22
• Study Completion Date: 2021-04-15

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.

Detailed Description

Acquiring a spinal cord injury (SCI) can be a traumatic event resulting in significant life changes. Both the physical and psychosocial consequences of spinal cord injury may negatively impact one's ability to accomplish activities of daily living, fully participate in occupations, and fulfill social roles. People with SCI are at a greater risk for major health conditions such as heart disease, high blood pressure, obesity, and diabetes than the population without disabilities. Approximately 30% of individuals with SCI are also at risk for developing negative mood states that include depression, anxiety, and anger. These negative mood states can also increase the risk of poor health outcomes, including increased medical complications, decreased independence in self-care, and decreased productivity. People with SCI also often require a great deal of supports and services to live independently within the community, such as a personal care attendant to assist with activities of daily living, access to accessible transportation, access to medical care, and access to repair services for their mobility device. Many of these supports and services are difficult to obtain in the community, medical institutions, and businesses when everything is operating in a regular capacity. With the changes in daily operations related to the COVID-19 pandemic there are many concerns about whether vulnerable populations like persons with SCI will be able to access the supports and services they need, this project will give the investigators information about what the needs are and whether they are being met.

Conditions

Spinal Cord Injuries

Study Design

• Observational Model Type: COHORT
• Study Time Perspective: PROSPECTIVE

Eligibility Criteria

Inclusion Criteria

• 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.

Exclusion Criteria

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

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Washington University School of Medicine

OTHER

Sponsor Role: lead

Responsible Party

Kerri Morgan

Assistant Professor of Occupational Therapy and Neurology

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Kerri A Morgan, PhD

Role: PRINCIPAL_INVESTIGATOR

Washington University School of Medicine

Locations

Washington University School of Medicine

St Louis, Missouri, United States

Countries

United States

References

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.

Reference Type: 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.

Reference Type: BACKGROUND

PMID: 23174549 (View on PubMed)

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

Reference Type: BACKGROUND

PMID: 15201471 (View on PubMed)

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.

Reference Type: 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.

Reference Type: 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.

Reference Type: BACKGROUND

PMID: 15077662 (View on PubMed)

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.

Reference Type: BACKGROUND

PMID: 22270190 (View on PubMed)

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.

Reference Type: BACKGROUND

PMID: 18047880 (View on PubMed)

Other Identifiers

202005026

Identifier Type: -

Identifier Source: org_study_id