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OUTLINE

 1.  ABSTRACT
 2.  Keywords
 3.  Abbreviations
 4.  Methods
 5.  Results
 6.  Discussion
 7.  Study Limitations
 8.  Conclusion
 9.  Suppliers
 10. References

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FIGURES (3)

 1. 
 2. 
 3. 




TABLES (2)

 1. Table 1
 2. Table 2




ARCHIVES OF REHABILITATION RESEARCH AND CLINICAL TRANSLATION

Available online 2 June 2023, 100271
In Press, Journal Pre-proofWhat’s this?

ORIGINAL RESEARCH
PERCEIVED IMPACT OF THE COVID-19 PANDEMIC AMONG PEOPLE WITH SPINAL CORD INJURY:
A DESCRIPTIVE STUDY

Author links open overlay panelJames S. Krause PhD, Melinda Jarnecke BS
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ABSTRACT


OBJECTIVE

To describe the self-reported impact of the COVID-19 pandemic on the lives of
persons with spinal cord injury (SCI).


DESIGN

Cross sectional study.


PARTICIPANTS

There were a total of 382 adult participants with traumatic SCI of at least
one-year duration, all of whom were identified through a state-based
surveillance registry in the Southeastern United States. The majority of
participants were male (68.4%) and 72% were ambulatory. The average age at the
time of the study was 57.7.


MAIN OUTCOME MEASURES

Participants completed a self-report assessment (SRA) online or by mail on the
impact of COVID-19 on quality-of-life, ability to get daily necessities, and
access to healthcare.


RESULTS

Over half of the participants (58.9%) reported a negative impact of the pandemic
in at least one of five life areas, with community participation being the
primary area affected (51.4%). A small portion of individuals had trouble
obtaining necessities, with approximately 12% reporting difficulties getting
enough or quality food and 8.2% reporting difficulty getting prescription
medications. However, 25% reported delaying healthcare procedures because of
fear of catching COVID-19. Among those requiring personal assistance, 32%
reported a decrease in quality of care and 51.9% relied more on family to assist
with their care.


CONCLUSION(S)

The COVID-19 pandemic had multiple negative impacts. Of particular importance
were reduced access to healthcare and declines in quality and stability of
attendant care, with greater reliance on family. Fear of contracting COVID-19
when accessing routine medical procedures needs to be addressed in future
outbreaks.


KEYWORDS

spinal cord injury
COVID-19
quality-of-life
vaccinations
community participation


ABBREVIATIONS

PPE
Personal protective equipment
SRA
Self-report assessment
SCI
Spinal cord injury

The COVID-19 pandemic is a public health crisis that has dramatically changed
everyday life. COVID-19 has presented challenges to community participation,
quality-of-life, and health, as it has restricted community participation and
access to daily necessities and services. The pandemic may have particularly
adverse effects for those with chronic conditions,1 including people with severe
physical disability, because of both the increased susceptibility to COVID-19
and the disruption in the social, healthcare, and supportive network.2 Numerous
reports have documented a drop or delay in people seeking healthcare services
due to fear of COVID-19, and in some cases, this disruption in care has caused
inadvertent harm.3 Changes in behaviors during the lockdown have been
well-established,4,5 with one study finding that 21% of participants worsened
their patterns of behavioral change (increases in smoking, alcohol consumption,
and weight and decreases in physical activity levels and sleep), while 25%
improved their patterns of behavior (increases in activity levels, decreases in
weight and alcohol consumption.6

Traumatic spinal cord injury (SCI) typically results in severe physical
disability and has a lifelong impact on health, including the development of
many secondary or chronic health conditions, such as cardiovascular disease.7
Therefore, people with SCI may be at a greater risk for adverse effects from the
COVID-19 virus, and have additional difficulties obtaining daily necessities
because of limitations in ability to complete tasks in the community. Further,
many individuals with SCI depend on personal care attendants to help with daily
tasks and long-term care activities. For these people, there is an added element
of certain COVID-19 precautions, such as strict isolation and social distancing,
not being feasible.

Additional questions can be raised about how the COVID-19 pandemic may have a
particularly significant impact on those with more severe SCI, as they require
specialized equipment, such as wheelchairs and braces.8 These may be more
difficult to obtain or service during the pandemic. Of greater importance,
personal care assistance has been less available during the pandemic, with fewer
workers and work shortages at present.9

We are more than three years removed from the onset of the pandemic, yet there
is minimal research on the impact of the pandemic on persons with SCI. Clinical
studies have indicated that among those with SCI who have had COVID-19, fewer
symptoms were exhibited compared to those in the general population, but there
was greater clinical severity and often delayed diagnoses and treatments.10,11 A
study by Monden and colleagues assessed SCI participants’ concerns about medical
rationing, access to supplies, and impact on overall health and mental health,
and found that the pandemic negatively impacted mental health and caused
increased difficulty accessing medical supplies.12 While a few studies have been
published, particularly absent are studies that document the perceptions and
experiences of people with SCI, as well as studies of actual changes in
outcomes.

The purpose of the current study was to describe the perceived impact of the
COVID-19 pandemic on the lives of people with SCI. The areas of focus include
general adverse impact, ability to obtain daily necessities, and the ability to
obtain and maintain SCI supplies, special equipment, and attendant care. Having
such information is essential for both understanding the impact of the pandemic
from the perspectives of people with SCI, as well as preparing for future
outbreaks.


METHODS


PARTICIPANTS

Institutional review board was approved prior to initiating data collection.
Documentation of informed consent was waived, and the completion and return of
the survey indicated the participants’ understanding and willingness to
participate in this research study. Participants were initially identified
through a single state-based, population registry and enrolled in a longitudinal
study on health outcomes. The eligibility criteria at enrollment were: 1)
minimum of 18 years of age, 2) traumatic SCI, and 3) minimum of one-year
post-injury at enrollment. A total of 382 of a possible 590 eligible individuals
from the longitudinal outcomes study completed materials during 2020 and 2021,
including a supplemental set of questions regarding the perceived impact of the
pandemic on multiple areas of life, including basic needs and SCI specialty
needs.


PROCEDURES

Prospective participants were sent a letter via mail describing the study and
soliciting participation. The letter contained a unique identifier and a link to
a web application, REDCap, so that participants could complete the self-report
assessment (SRA) online. If it was not completed within approximately 3-4 weeks,
a paper form of the SRA was mailed. Data were recorded by phone for those who
had difficulty completing the materials themselves. Two follow-up mailings were
utilized and a follow-up phone call. Participants were paid $40 remuneration to
complete the materials. All responses were received between December 2020 to
March 2022.


MEASURES

A short questionnaire regarding COVID-19 was developed in response to the
pandemic and added to an existing SRA. It requests mostly objective information
on the effects of the pandemic and was designed in the absence of validated
measures. Information elicited was used to describe the demographic and injury
profiles of the participant. The COVID-19 pandemic questions and the outcome
measures in the current report were broken into several sections. Access to
daily living requirements was measured by four yes/no questions, whether they
had difficulty obtaining 1) enough food or good quality food, 2) prescription
medication(s), 3) transportation, and 4) routine medical or dental care.
Perceived adverse impact of the pandemic on life was measured by five Likert
scales, ranging from strongly disagree to strongly agree, including: 1)
social/family/community participation, 2) employment, 3) physical health, 4)
mental health, and 5) financial well-being. Several questions asked about
general access to healthcare, including access to SCI supplies, equipment, and
personal care attendants. Participants also were asked whether they had
postponed routine healthcare or treatments. Lastly, status on testing and
vaccination were ascertained, but only used for descriptive purposes.


STATISTICAL ANALYSIS

All analyses were completed using IBM SPSS Statistics for Windows, version 25.a
Basic descriptive statistics were used to describe the study participants in
outcomes. Simple frequency counts were used to describe the responses. Means and
standard deviations were calculated.


RESULTS


DESCRIPTION OF THE STUDY COHORT

Most participants were non-Hispanic white (56.8%), followed by non-Hispanic
black (36.2%; table 1). Sixty-eight percent were male. The average age of
participants was 57.7 and the average years of education was 12.9. In terms of
SCI characteristics, 70.5% percent reported cervical injuries, 19.9% thoracic,
8.9% lumbar, and .6 sacral. Seventy two percent were ambulatory. The average
number of years since SCI onset was 13.1.

Table 1. Description of demographic variables.

VariablesN (%)Sex Male245 (68.4%) Female113 (31.6%)Race/Ethnicity Non-Hispanic
White210 (56.8%) Non-Hispanic Black134 (36.2%) Hispanic11 (3.0%) Other15
(3.9%)Injury Severity Cervical237 (70.5%) Thoracic67 (19.9%) Lumbar30
(8.9%) Sacral2 (0.6%)Ambulatory273 (72.0%)Relationship Status Married or
unmarried couple167 (44.3%) Divorced, widowed, separated, never married210
(55.7%)Mean (SD)Age57.7 (15.3)Time Since Injury13.1 (9.0)Years of Education12.9
(3.2)

At the time of the study, 45.8% had been tested for COVID-19 and 13.5% of those
tested positive (table 2). Just over 10% reported also having a family member
who had tested positive. At the time of participation, 60.6% reported that the
vaccine was available. Of these, 41.7% had received the vaccine. Of those who
had not been vaccinated, 55.3% reported they planned to get vaccinated. Of those
not planning to be vaccinated, the vast majority reported concerns with side
effects (69.4%), 12% reported transportation difficulties, and 4.6% reported
cost.

Table 2. Self-reported effects of COVID-19 pandemic restrictions.

VariablesYes (%)Tested for COVID-1945.8Tested positive for COVID-1913.5Family
member tested positive for COVID-1910.2Vaccine available60.6 If yes, been
vaccinated47.1 If no, plan to be vaccinated55.3Of those not planning to be
vaccinated, reasons include Concerned about side effects69.4 Concerned about
transportation difficulties12.0 Concerned about cost4.6COVID-19
affected: Social/family/community participation51.4 Employment20.7 Physical
health22.7 Mental health28.8 Financial well-being26.6Difficulty getting
prescription medications8.2Difficulty getting enough or good quality
foods12.1Difficulty with transportation12.4Difficulty getting routine medical or
dental care15.5Difficulty getting timely treatment for SCI problems8.8Delayed or
canceled medical procedure for fear of catching COVID-1925.0Needed special SCI
equipment39.5 Of those, difficulty maintaining SCI equipment21.3Needed SCI
supplies34.7 Of those, difficulty maintaining SCI supplies35.5Needed personal
care assistance14.7 If yes, quality has declined32.1 If yes, attendant left or
reduced hours37.0 If yes, had to rely on family for care more than usual51.9


DAILY REQUIREMENTS

A small percentage reported difficulties getting prescription medications (8.2%;
figure 1), getting enough or good quality foods (12.1%), or having difficulty
with transportation, getting to and from places (12.4%; table 2). A higher
percentage (15.5%) reported difficulty getting routine medical or dental care,
and 25% reported delaying or canceling a medical procedure, treatment, or
therapy, due to fear of catching COVID-19. However, only 8.8% reported
difficulty getting timely treatment for SCI problems, such as urinary tract
infections or pressure ulcers.

 1. Download : Download high-res image (159KB)
 2. Download : Download full-size image

Figure 1. Self-reported difficulties in obtaining daily necessities and needed
treatments due to COVID-19


PERCEIVED IMPACT ON LIFE OUTCOMES

The majority (58.9%; figure 2) of participants agreed or strongly agreed that
COVID-19 affected at least one area of their life. Thus, 41.1% strongly
disagreed, disagreed, or were neutral to statements regarding the impact of
COVID-19 on quality-of-life. More than half of the participants (51.4%) reported
that COVID-19 restrictions negatively affected their community participation
(table 2). A smaller, yet significant, percentage indicated concerns with other
areas that included mental health (28.8%), financial well-being (26.6%),
physical health (22.7%), and employment (20.7%).

 1. Download : Download high-res image (224KB)
 2. Download : Download full-size image

Figure 2. Percentage of participants agreeing or strongly agreeing that they
were adversely affected by COVID-19 in each of five areas


SCI-SPECIFIC NEEDS

Because the majority were ambulatory, only 39.5% reported needing special SCI
equipment; 34.7% reported use of regular SCI supplies, such as catheters or
gloves. While 21.3% of those requiring special equipment had difficulties with
maintenance, 35.5% reported more difficulty maintaining their regular SCI
supplies. Just under 15% required the use of personal care assistance. Of this
group, 32.1% indicated that the quality of their personal care declined since
the pandemic, 37% reported an attendant leaving or reducing their hours, and
over half (51.9%) reported having to rely on family members for care more than
usual (figure 3).

 1. Download : Download high-res image (215KB)
 2. Download : Download full-size image

Figure 3. Changes in access and quality of personal care assistance for
individuals with SCI who required daily assistance to meet their needs


DISCUSSION

This study addresses a significant gap in literature as it describes the
perceived impact of the COVID-19 pandemic on ability to obtain daily
necessities, access to care, and adverse impact on key areas of life. Some
questions addressed special needs of those with more severe SCI related to
ability to get and maintain equipment, supplies, and appropriate attendant care.
These findings help us better understand the scope of the problem with the
pandemic and SCI and to help to plan for potential adverse outcomes of future
outbreaks. Although we also asked about vaccination and testing for the disease,
we could only report general findings as these indicators were often queried
early in the pandemic, often prior to the availability of vaccine.

Several important findings emerged from the data. First, there were a limited
portion of individuals who reported difficulties obtaining daily necessities,
such as food, transportation, or prescription medication (these ranged between
only 8.2% and 15.5%). It was somewhat surprising that, other than reduced
community participation where just over half of the participants (51.4%)
reported adverse effects of the pandemic, there were relatively small portions
of individuals who indicated adverse effects in other areas, especially
considering that this is a representative sample of the SCI population, rather
than simply those with SCI who were treated by specialty hospitals. There are
several potential explanations why the perceived adverse effects of the pandemic
were not more severe. First, those with SCI already have ongoing challenges to
their social participation and quality-of-life. In terms of daily necessities,
many people already have an established support system for maintaining daily
necessities, so perhaps a portion of the participants were already doing those
things necessary to survive during the pandemic.

There were significant concerns with people who have reported delaying or
canceling a medical procedure, treatment, or therapy, due to fear of catching
COVID-19 (25.1%). In the United States general population, an even higher
percentage (40.9%) of adults avoided medical care during the pandemic.13However,
this is likely explained by the fact that those with SCI are more plugged into
the healthcare system over the general population, with one study finding that
those with SCI have an average of 22 contact points in the healthcare system in
the year of injury compared to 3 within the general population.14 Given the
profound impact of SCI on health and likelihood of developing secondary health
conditions,15 it is disconcerting that people were choosing not to get therapies
and treatments. The potential impact of people not receiving needed treatment
may be particularly poignant for those therapies that are needed to preserve
function and independence, and to treat and prevent life-changing and
life-threatening secondary health conditions, such as pressure ulcers. Pressure
ulcers and UTIs are associated with a much greater likelihood of mortality.16-18
Therefore, even though a smaller portion of people with SCI delayed needed
procedures when compared with the general population, it is highly likely that
those procedures were related to more severe conditions and may have more impact
by virtue of the delays. This however is an empirical question, and we cannot
answer it definitively based on the current data.

There was a significant issue with attendant care, as 32.1% of the participants
with paid attendant care indicated that the quality of their care had
diminished. Moreover, nearly 52% indicated greater reliance on family members
for their care. This is of concern because quality attendant care is essential
to maximizing independence, which is a fundamental goal of rehabilitation, and
to ensure individuals live in the least restrictive environments, as mandated by
the Olmstead act.19 Additional reliance on family members brings in individuals
closer to yet even more restricted environments, such as assisted living and
nursing home placements. In addition to personal risk of COVID-19, of concern is
that 10.2% of the participants had someone in their household with COVID-19.
Wages for caregivers are typically low and often without benefits. The elevated
levels of job-related physical and emotional stress during the pandemic20,21 may
be adding to difficulties maintaining the support necessary to live
independently. This was supported by our finding that 37% of participants lost
caregivers or had reduce caregiver hours since the beginning of the pandemic.
Additionally, health care providers, including personal care attendants, are at
a heightened risk for developing and spreading COVID-19, as they cannot social
distance.22 Our findings underscore the fragility of the personal care attendant
system, which was already facing challenges and high turnover prior to the
pandemic.23 Policy changes are needed to improve prestige, wages, and benefits
of those doing home care.

Given the difficulties reported in obtaining regular supplies, there had been
critical shortages of personal protective equipment (PPE),24 which no doubt has
led to difficulties obtaining PPE for both those with SCI and their personal
care attendants. PPE is essential for catheter and bowel programs. Our findings
revealed that, among those needing regular SCI supplies, 41.4% reported more
difficulty obtaining them. The challenge to obtain these supplies is of concern,
since hand hygiene, especially the use of latex gloves, can prevent
infections.25,26 One study revealed that during COVID, having access to adequate
PPE increased feelings of safety and led to better job gratification and less
distress among healthcare workers.27


STUDY LIMITATIONS

There are several important strengths of the current study. First, the timing of
the data collection, with a group of longitudinal participants, provided
insights into the consequences of the pandemic, including needs for supplies,
equipment, and personal care assistance. A second strength was identifying
participants through a state SCI registry, which is population-based. Use of
this cohort of participants reduced selection bias and has greater
generalizability than studies of completely self-selected volunteers identified
through advertisements, or recruitment through specialty hospitals where
admission practices may exclude lower socioeconomic participants.

There are several limitations. First, the instrument requested only basic
information and was not validated against objective indicators. It therefore
does not allow for comparisons with the general population. Such comparisons
were beyond our goal, which was simply to probe how the COVID-19 pandemic was
impacting the lives of people with SCI. Second, all data were self-report and
susceptible to reporting biases. We specifically measured perceived impact, so
actual impact may differ in unknown ways. Third, because of the sudden and
unexpected nature of the pandemic, we had no option to fully align items with
other efforts nationally, so we cannot directly compare our observed outcomes
directly with other studies. Fourth, our sample size is relatively small for
specific subgroups, such as those who require personal care assistance or those
requiring specialized equipment and supplies. Therefore, we have only limited
information on these individuals. Fifth, the data are cross-sectional, assessed
on a single occasion, even though part of a larger longitudinal study. The data
were collected from a single region – a state within the southeastern United
States, and there are regional factors that affect vaccine distribution.
Additionally, because we implemented the study as early as possible after the
onset of the pandemic, the severity of the impact of COVID-19 shifted between
the study's inception and the study's conclusion. Lastly, although we collected
data on history of disease and vaccination, the vaccine was not yet available
when some participants responded. So, the data can only be used for rough
descriptive purposes and not for epidemiologic estimates.


FUTURE RESEARCH

Longitudinal studies are needed that have both pre-and post- COVID-19
assessments, rather than the single cross-sectional self-report assessment, to
identify actual changes in outcomes over the COVID-19 pandemic, rather than
perceptions of changes in outcomes. There is a need to incorporate COVID-19 and
related items within larger ongoing data collection efforts, such as the SCI
Model Systems in the USA. This would help us monitor the impact of the pandemic
over time, including future outbreaks. We also need to identify how long it
takes for outcomes to recover after the original pandemic subsides and any
lingering effects that will depend on the ultimate course of COVID-19.

More broadly, we need to identify the effects of COVID-19 among those who have
caught the virus. Is the course more deadly for those with SCI than those in the
general population? In terms of vaccination, it was noteworthy that a
substantial portion of people with no plans to get vaccinated reported concerns
of side effects. We also need to better understand the actual complications or
side effects from vaccination and whether some of these are exacerbated by SCI,
such as increased spasticity or dysreflexia.


CONCLUSION

Participants have perceived that the COVID-19 pandemic has adversely impacted
their lives to varying degrees, although the effects are not universal. A
portion of individuals have experienced difficulties meeting daily needs and
over one quarter of the participants reported delaying or canceling medical
procedures or therapies.


SUPPLIERS

a. IBM SPSS Statistics for Windows [computer program]. Version 25.0. Armonk, NY:
IBM Corp; 2017.


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Support: The contents of this publication were developed under grants from the
National Institute on Disability, Independent Living, and Rehabilitation
Research (NIDILRR), 90RT5003, and the South Carolina Spinal Cord Injury Research
Fund (SCSCIRF) grant SCIRF 2017 SI-02. NIDILRR is a Center within the
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and work are clearly identified in the title page of the manuscript.

The manuscript submitted does not contain information about medical device(s).

Reprints are not available from this author.

© 2023 Published by Elsevier Inc. on behalf of American Congress of
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