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To the Editor:
During the first months of the COVID-19 pandemic, healthcare acutely
switched almost exclusively to virtual delivery (1, 2), with little
precedent, and even less knowledge about caregivers’ comfort with such
delivery. It is unlikely that we will ever return to exclusively
in-person care (3, 4). Thus, there is a critical, but currently
unstudied, need to understand caregivers’ attitudes toward virtual food
allergy management. To address this knowledge gap, we performed a
mixed-methods study in which we sought to examine caregivers’ views on
virtual food allergy care.
In this embedded mixed-methods study (5), quantitative and qualitative
data were concurrently collected from English-speaking caregivers of
children <18 years being followed by an allergist for food
allergy in Canada. Between October-December 2020, caregivers were
contacted via email distribution lists from regional and national
patient organizations; and through social media.
Basic demographics and caregiver experiences with virtual care (see
Table E1 for definitions) were queried and collected in SurveyMonkey®.
Data were described (n/N, %, mean (standard deviation [SD]) and
compared (chi2, t-tests), using Stata® 15.1 (College Station, TX), with
p<0.05. Open-ended responses were analyzed thematically (6).
Quantitative and qualitative findings were mixed in the interpretation.
This study was approved by the University of Manitoba Health Research
Ethics Board (HS24207(H2020:384)).
Overall, 66 caregivers completed the survey, which represents 85.7%
(66/77) who started the survey. Approximately half of caregivers had
graduate/professional degrees (30/64; 46.9%). Half of children were age
≤5 years (33/65; 50.8%) with slightly more boys than girls included
(59.1% vs. 40.9%; Table 1). The three most frequently reported food
allergies were peanut (42/66; 63.6%), tree nuts (30/66; 45.5%) and egg
(29/66; 43.9%). Nearly all families lived within 50 km of their
allergist.
The most frequently reported type of allergy-related care was routine
follow-up (50/66; 75.8%; Table 2). Overall caregiver-reported
satisfaction (virtual + in-person combined) was comparable between
routine follow-up and initial assessments, oral food challenges (OFC)
and oral immunotherapy (OIT). A corresponding comparison to early food
introduction was not performed due to a low number of these visits
reported (3/66; 4.5%). Satisfaction with virtual versus in-person care
was comparable. For example, mean satisfaction scores for initial
assessments for virtual and in-person care were 66.5±8.0 and 81.1±5.3,
respectively (p=0.21).
Qualitatively, caregivers described virtual allergy-related care as
having “the benefit without the burdens” (Figure 1). This theme
reflects caregivers’ descriptions of being able to access care for their
child’s allergy, without concerns for childcare for other children in
the family; losing several hours for travel and wait times; or, about
being exposed to the COVID-19 virus. As one caregiver described, virtual
allergy care could be done “from home or work, [with] no
childcare issues, no commute time, no exposure to covid (sic) .”
Another caregiver noted additional benefits including “saving
money (parking and lunch fees at hospital), don’t need to pull kids from
school for appointment, home setting is comfortable [so] child not
nervous. ”
Caregivers also perceived disadvantages. The single word theme,
“Isolation,” captures the isolation felt by parents of children with
food allergy. As a caregiver, whose child’s in-person appointment for
routine allergy-testing had been moved to virtual care, commented that
virtual care contributed to feelings of isolation
[We are] feeling even more isolated as an allergy family. We
already feel we live on the periphery of society as we watch our son’s
friends have birthday parties while he sits far away from everyone to
ensure his safety.
Isolation was also described by parents of children requiring diagnostic
testing, those who were newly diagnosed, and those who were receiving
OIT. Similarly, caregivers noted the amplification of social isolation
that existed prior to the pandemic. A small minority reported “no
advantages ” to virtual allergy care, noting that there are
“just disadvantage(s) ‘cause no skin testing was available.”This lack of access to testing exacerbated the perception of isolation.
Likewise, isolation was described by caregivers whose children were
receiving higher risk treatment. Caregivers expressed concern that there
was no medical professional physically present to assist if their child
were to have a reaction subsequent to testing. As noted by parents whose
child had received virtual OIT expressed that, if the child were to
react, “I am the only one here to help him .” Another caregiver,
whose child’s in-person appointment for routine allergy-testing had been
moved to virtual care, commented that virtual care for food allergy
further contributed to feelings of isolation:
In this first mixed-methods study of caregivers’ experiences with food
allergy care during the COVID-19 pandemic, there were no significant
differences in caregiver satisfaction by type of care, or by type of
delivery, based on quantitative data. Qualitatively, caregivers detailed
benefits and limitations of virtual care, including amplified social
isolation.
In keeping with the theme of isolation identified herein, we identified
a similar theme in a qualitative exploration performed prior to the
COVID-19 pandemic (7). In the previous study, parents reported
“anxiety and isolation ” and existed tenuously with allergy,
which had become their normal (7). Importantly, caregivers described
that this isolation was further exacerbated when they lacked support
from extended family and/or close friends. In the present study,
caregivers similarly described isolation, but did not speak to support
from family or friends. This may be partly attributable to the wider
isolation as a result of COVID-19-related physical distancing measures,
well beyond that experienced in virtual care. But, taken collectively,
these findings point toward a likely gap in support structures during
the pandemic, which must be addressed or otherwise places caregivers and
their children at further risk of isolation, including downstream
effects thereof.
Our mixed-methods study provided insights into specific disadvantages
that could not be captured through a quantitative survey. The COVID-19
pandemic has propelled virtual healthcare forward in ways that would
have otherwise taken generations. This type of healthcare delivery may
be a practical option even after the pandemic, particularly in rural and
remote regions, providing that there is reliable telephone and/or
internet access. We acknowledge that participants in the current study
were economically advantaged. Additional work exploring the satisfaction
of, and access to virtual care amongst economically-disadvantaged
caregivers is warranted. Shared decision making is an increasingly
important paradigm in allergy, and one which mandates a strong
physician-patient relationship (8). The findings presented herein
reinforce the need for caregivers to have a voice, particularly those in
lower socioeconomic groups, to promote high quality care. This cannot be
overstated if virtual care is to be successfully continued
post-COVID-19.
Whereas access to testing that requires in-person contact is
logistically challenging during a virtual appointment, we suggest that
this may be amendable to a hybrid model. Systems navigation is a
documented way of reducing the fragmentation and gaps in care, tailored
to address the needs and characteristics of a given patient population
(9). In an allergy context, this model may involve testing patients in
rural and remote regions with regional/local healthcare partners, after
which the results are sent to the allergist for interpretation. Future
research is warranted to explore this potential, and the related
cost-effectiveness.
In conclusion, caregivers were satisfied, yet felt socially isolated, as
a result of virtual care and more generally, food allergy. This study
provides the necessary first steps in guiding the sustainability efforts
of allergy care in this new virtual medicine era.