THE IMPACT OF THE COVID-19 PANDEMIC ON INDIVIDUALS WITH DOWN SYNDROME: A CROATIAN SURVEY
Barišić A, Ergović Ravančić M, Majstorović D, Vraneković J
*Corresponding Author: Assoc. Prof. Jadranka Vraneković, Faculty of Medicine, University of Rijeka,
Department of Medical Biology and Genetics, B. Branchetta 20, 51000 Rijeka, Croatia;
tel: +385 (0)51 651 131, fax: +385 (0)51 678 896. Email: jadranka.vranekovic@medri.uniri.hr
page: 51
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MATERIALS AND METHODS
Study design
This anonymous online survey was launched on
March 22, 2022, and remained open until October 10,
2022. It was approved by the Institutional Review Board of
the Biomedical Research Ethics Committee of the Faculty
of Medicine, University of Rijeka (Ref. No 2170-24-04-
3/1-22-13). The survey targeted parents and caregivers of
DS individuals in Croatia.
Participants
Participants were recruited online through a closed
Facebook support group DS – the strength of chromosome
21 (576 members). The group offered education and sup-
port for parents and caregivers of DS individuals. Potential
participants received a link to the survey website. Inclu-
sion criteria were a willingness to participate in the study
and a completed questionnaire. An information sheet for
participants was provided at the beginning of the survey.
Survey
The questionnaire was originally developed in Croatian
by the authors for the current survey. It included 18 ques-
tions on participant characteristics (six questions), medical
information (three questions), clinical presentation of CO-
VID-19, treatment, and vaccination (six questions), as well
as challenges parents faced during COVID-19, the impact
on the child, and medical support for them (three questions).
To preserve the anonymity of the survey, no internet log ad-
dresses were collected. The full questionnaire can be found
in the Supplementary material. Additionally, participant
characteristics were compared with data of T21RS.
Data analysis
Statistical analysis was performed using SPSS ver-
sion 13.3 (StatSoft, Inc., Tulsa, OK, USA), for Windows.
Descriptive statistics were used to summarize the data.
Categorical data were described as frequencies (percent-
ages), and quantitative variables were expressed as means
(SD). A chi-square test examined the differences between
categorical variables to determine if they were related.
Post hoc tests were applied to detect specific differences
between groups when results were statistically significant.
One-way ANOVA was used to compare independent and
dependent variables, whereas Pearson correlation mea-
sured the statistical relationship between the variables.
Results
We collected 268 surveys from parents or caregiv-
ers of individuals with DS from March to October 2022.
Results stratified by category are shown below.
Participant characteristics
Participant characteristics are listed in Table 1. The
most common age category was 5-12 years (38.4%), with
a mean age 8.7± 8.1 (mean±SD) years. The proportion
of male children was slightly higher (54.1%). Our study
showed that 60.8% of DS individuals had body mass index
(BMI) <18.5 kg/m 2 . There was a statistically significant
association between BMI and age (r=0.811). The majority
of cases (74.7%) had full trisomy 21 and a moderate level
of intellectual disability (34.7%). Most of the cases lived
at home with their family (95.5%). In comparison with
high-income countries (HICs), all analysed participant
characteristics (except gender) were significantly differ-
ent (p<0.05).
Medical information
We catalogued 18 different comorbidities that are
common in individuals with DS. Congenital heart defect
(CHD) was the most common comorbidity (41.4%), fol-
lowed by thyroid disorder (19.5%) and allergies (8.6%).
Among CHDs, the most common type was atrioventricular
septal defect (AVSD) (32.4%). Overall, 69.8% of cases
reported not taking any supplements, whereas the others
who reported their daily intake, mainly used probiotics
(34.0%), multivitamins (29.8%), and vitamin D (25.6%)
(Table 2). There was no statistically significant correlation
between CHDs/supplementation with symptom severity
(r= -0.190; r=0.001).
Clinical presentation of COVID-19,
treatment and vaccination
About half of the cases reported being SARS-CoV-2
positive (50.7%). The main signs and symptoms associ-
ated with COVID-19 in individuals with DS were fever,
cough, and shortness of breath - alone or in combination
(Table 3). The chi-square test for a relationship between age and symptoms of COVID-19, showed a statistically
significant positive association (χ2=23.35; P=0.025). A
post hoc test revealed that this difference originated from
age group 3 (5-12 years), which was found to have the low-
est number of symptoms, compared with all other groups
(χ2=12.28; P=0.006). BMI was significantly and posi-
tively correlated with clinical presentation of COVID-19
(F(1.13)=5.44; P=0.021). The most common medications
were paracetamol, azithromycin, and natural remedies -
alone or in combination. 4.4% of cases reported medical
complications due to COVID-19 and were hospitalised.
Vaccination against SARS-CoV-2 was reported in 11.2%
of DS individuals (Table 3).
Challenges for parents during COVID-19,
impact on the child and medical support for parents
Overall, 144 (53.7%) of parents reported one or more
challenges during COVID-19. The lack of social activi-
ties, cancelled therapies, and psychological problems
were most frequently mentioned (Table 4). Significant
impairment of the child’s physical health and/or emotional
well-being was reported in 19.7% of cases. Parents’ level
of satisfaction with medical support ranged from ‘not
satisfied’ (12.7%) to ‘very satisfied’ (17.9%), with the
highest proportion in the ‘moderately satisfied’ group
(21.7%) (Figure 1, Table 4).
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