Clinical trial NCT04422769: Needs of Persons with Spinal Cord Injury (SCI)
Official title: Tracking Needs of Persons with a Spinal Cord Injury (SCI) During the COVID-19 Pandemic
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Spinal Cord Injuries
Lead sponsor: Washington University School of Medicine
Sponsor class: OTHER
First posted: 2020-06-09
Enrollment: 53
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: PROSPECTIVE
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.

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.

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

Primary outcomes:
measure: NIH Toolbox Instrumental Support Survey - change in instrumental support
timeFrame: Baseline, 3 month and 6 month
Secondary outcomes:
measure: UCLA (University of California - Los Angeles) 3-item Loneliness Scale - change in social isolation
timeFrame: Baseline, 3 month and 6 month
Other outcomes:
Locations:
city: St. Louis
country: United States
facility: Washington University School of Medicine
state: Missouri
Study officials:
affiliation: Washington University School of Medicine
name: Kerri A Morgan, PhD
role: PRINCIPAL_INVESTIGATOR
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