On January 21, 2020, the Centers for Disease Control and Prevention (CDC) announced
the first case of the Novel Coronavirus disease (COVID-19) in the United States [1].
COVID-19 is a severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) [2]. Despite
reactive measures taken by the U.S. to prevent further infections, the country, ranks
first in the number of COVID-19 cases [3]. Though there is limited information regarding
the risk factors for severe disease, available information suggests older adults and
those with serious underlying conditions (including HIV) are at higher risk [4]. The
lack of current information on COVID-19 risk among PLWH may leave PLWH, especially
those who are older and have advanced immune suppression, feeling under prepared in
protecting themselves from acquiring COVID-19.
Before COVID-19, our research team had just begun a feasibility clinical trial of
a mind–body intervention for older adults living with HIV in Miami, Florida. Participants
were randomly assigned to one of three conditions: a tai chi/qigong intervention,
a sham qigong, and a no treatment group. Both the tai chi/qigong intervention and
sham qigong groups were in-person groups. On March 13, 2020, we suspended the trial
due to COVID-19. Senior investigators discussed the possibility of using Zoom videoconferencing
to continue the intervention; however, after much discussion with investigators and
staff, it was decided that this was not a viable option for our participants for the
following reasons: limited data plan on smartphones, lack of computer in the home,
lack of privacy to do the intervention, and lack of knowledge regarding videoconferencing.
In addition, based on conversations with our program officer, it was also determined
that videoconferencing the intervention would change the nature of the intervention
itself. Although the clinical trial was temporarily suspended, we continued to contact
our participants weekly via phone calls as per study protocol; however, we also used
it as a ‘check-in’ and added a few questions, with IRB approval, regarding the coronavirus
situation to track any possible adverse events. As part of the weekly calls during
the COVID-19 social distancing period, participants are currently being asked a subset
of 7 questions related to their potential symptoms of COVID-19, experiences in SARS-CoV-2
testing, the effects on their HIV care, and stress during the COVID-19 pandemic. This
Note describes some of the preliminary information gathered from the first of these
weekly ongoing calls.
COVID-19 Related Information Collected
Of the 24 participants in the first cohort of the clinical trial, five participants
were lost to follow up, and there were another 3 currently enrolled participants that
were not able to be reached by phone during the first call. Sixteen of the 19 currently
enrolled participants completed the COVID-19 related factors questionnaire. Demographic
information can be found in Table 1.
Table 1
Sample characteristics and current COVID-19 outcomes among a sample of older people
living with HIV
N (%)
Mean ± std
Age
57.4 ± 6.0
Sex
Male
6 (37.5%)
Female
10 (62.5%)
Race/ethnicity
White, Non-Hispanic
0 (0.0%)
Black, Non-Hispanic
13 (81.3%)
Hispanic
3 (19.7%)
Sexual Orientation
Heterosexual
13 (81.3%)
Homosexual/bisexual
3 (19.7%)
Education
< High School
5 (31.3%)
High School
6 (37.5%)
> High School
5 (31.3%)
Presence of COVID-19 symptoms
Fever
0 (0.0%)
Dry cough
1 (6.3%)
Productive cough
2 (12.5%)
Shortness of breath
0 (0.0%)
HIV care outcomes during COVID-19 social distancing
Kept HIV care appointmentsa
10 (83.3%)
Received antiretroviral therapy
16 (100.0%)
Kept in contact with case managerb
10 (83.3%)
Covid-19 Stress
4.4 ± 3.3
n = 16
aDenominator was among those who had appointments (n = 12)
bDenominator among those who knew they had a case manager (n = 12)
We asked our participants about their potential COVID-19 symptoms based off of the
CDC recommendations used to screen people into testing [5]. Among the sample, 3 participants
experienced one potential symptom of COVID-19 which were a productive cough (n = 2)
and a dry cough (n = 1). However, the participants who listed productive cough as
a symptom said that the cough preceded the COVID-19 pandemic. Four participants sought
SARS-CoV-2 testing, but interestingly none of the participants who reported symptoms
were those who sought testing. Three of those who sought testing received a test.
Two tested negative and 1 participant was awaiting results. The participant who was
unable to receive testing indicated that it was due to being unaware that an appointment
was necessary to receive a test. These findings could highlight potential barriers
in educating older PLWH in COVID-19 symptoms and testing; particularly as it pertains
to (1) identifying symptoms of COVID-19, (2) knowing who should be tested for SARS-CoV-2,
(3) the appropriate protocol to procure a test depending on location (i.e. drive through
testing vs appointment driven testing).
When looking at the effects of COVID-19 on HIV care, we found among participants who
had HIV care appointments since the initiation of social distancing (n = 12), ten
participants were able to keep their HIV health care appointments. Among those who
made their appointments, two mentioned their visit transitioning to ‘telehealth’.
All participants were able to receive their HIV antiretrovirals (n = 16). Among those
who were aware they had a case manager (n = 12), two were not able to keep in contact
with their case manager, but mentioned difficulty even before social distancing.
We were also interested in the stress that participants were feeling during this period
of COVID-19 and social distancing. We asked participants to rank their stress since
social distancing from 1 to 10 with higher scores indicative of greater stress. The
average level of stress reported by our sample due to COVID-19 was 4.4 ± 3.3 with
scores ranging from 1 to 10. Among the most stressful things participants reported
were potential exposures to SARS-CoV-2, adjusting to social distancing, and issues
related to finances. One participant reported a perceived benefit, noting that the
connection to an emergent social support system had decreased their perceived loneliness.
Insights and Implications
Preliminary findings from our weekly calls to older people living with HIV suggest
that most of our participants continue to receive HIV care in person, although telehealth
was reported by some and could be an important alternative to in-person care in the
future. One participant did report not being able to get a SARS-CoV-2 test because
they did not have an appointment. It is unclear why this was the case. Clinics should
prioritize certain vulnerable populations such as older PLWH for testing, or perhaps
provide testing during a routine care visit if available. Stress levels do seem to
be impacted by COVID-19, and for our participants, stress revolved around its impact
on their health, on their sense of social isolation, and their economic situation.
For example, one participant asked if they could receive the study incentive even
if the trial was suspended. Researchers should consider how suspension of studies
may financially affect their target population. We did not ask about social isolation
directly; however, anecdotally, our research interviewer has observed how happy our
participants are to receive his phone calls and to talk to someone. One participant
was so grateful, he states, she cried during the phone call. Social isolation and
mental health should be assessed and addressed during such a crisis event.
Several policy implications should be considered. Previous guidelines have been composed
to address the deleterious effects of natural disasters on HIV care. However, these
guidelines seem to be geared mostly towards resource limited scenarios such as absence
of electricity, potable water, and/or shelter. New guidelines should be constructed
that address HIV care during epidemics which typically occur in the presence of necessary
resources. Our findings imply the need for future guidelines to include the following
information: when should clinics begin using telehealth methods to maintain client
appointments?; how often should HIV providers check in with their clients, and should
check-ins include mental health assessments?; what else can researchers do to help
participants get through difficult periods of uncertainty?; and what actions can researchers
take to educate their participants on emerging pandemics?
Moving forward, we will continue to conduct weekly calls to our participants; and
once the trial begins again, this first cohort will complete the intervention. However,
their pre- and post-data has been impacted by COVID-19. To address this, and if approved,
we will add another cohort of participants. In sum, weekly phone calls can help researchers
maintain contact with participants and provides an option for further data collection.
We also believe that our weekly phone calls to all our participants are helping them
stay connected and puts us in a position to help them in the case an emergency arises.