Received: 25 June 2020
|
Revised: 23 July 2020
|
Accepted: 28 July 2020
DOI: 10.1111/hae.14130
ORIGINAL ARTICLE
Impact of COVID-19 pandemic on mental health of patients
with inherited bleeding disorders in Germany
Sylvia von Mackensen1*
| Susan Halimeh2*
| Manuela Siebert2 |
Cornelia Wermes3 | Wolf Hassenpflug4 | Katharina Holstein5
| Martin Olivieri6
1
Department of Medical Psychology,
University Medical Centre HamburgEppendorf, Hamburg, Germany
2
Coagulation and Thrombosis Centre
(GZRR), Duisburg, Germany
3
Haemophilia Centre Hildesheim,
Hildesheim, Germany
4
Abstract
Background: The worldwide pandemic spread of SARS-CoV-2 can lead to either respiratory infection or containment-associated isolation with possible higher impact
on chronic diseases such as inherited bleeding disorders (IBD). The aim of the study
was to evaluate the impact of COVID-19 on patients and caregivers of IBD patients
Department of Paediatrics, Haematology
and Oncology, University Medical Centre
Hamburg-Eppendorf, Hamburg, Germany
regarding their concerns and worries related to own health, access to treatment and
5
Methods: Multicentre, cross-sectional study evaluating the impact of COVID-19 on
II. Medical Department, Haemophilia
Centre, University Medical Centre
Hamburg-Eppendorf, Hamburg, Germany
6
Paediatric Haemostasis and Thrombosis
Unit, Department of Paediatrics, Paediatric
Haemophilia Centre, Dr. von Hauner
Children's Hospital, University Hospital,
LMU Munich, Munich, Germany
Correspondence
Sylvia von Mackensen, Department of
Medical Psychology, University Medical
Centre Hamburg-Eppendorf, 20246
Hamburg, Germany.
Email: s.mackensen@uke.de
availability of factor concentrates and their experiences related to medical care.
mental health of IBD patients. An ad hoc questionnaire was developed and sent to
586 patients/caregivers with haemophilia A, haemophilia B and VWD type III. The
survey included information on demographic and clinical data, needs, concerns and
experiences regarding medical care during COVID-19 pandemic.
Results: In total, 355 of the IBD-Group (200 patients, 155 caregivers) completed the
survey (61.7% response rate). Most patients suffered from haemophilia A (73.8%) and
were severely affected (64.7%). Eleven patients were in quarantine due to suspected
COVID-19; none had symptoms. One quarter worried (very) strongly about getting
the coronavirus, 71.3% asked themselves what will happen to them when they will
get COVID-19, 40.1% felt unchanged, and 18.9% worried about delivery difficulties
of their IBD treatment product. In 52.8%, medical appointments were postponed.
Significant differences between caregivers and patients were found in most aspects.
Discussion: The IBD patients affected by a chronic disorder have particular thoughts
and worries regarding COVID-19. Haemophilia specialists should be committed to
address these concerns and guarantee treatment despite containment strategies.
KEYWORDS
bleeding disorder, COVID-19, mental health, patient survey, worries and concerns
*Sylvia von Mackensen and Susan Halimeh contributed equally to the manuscript.
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in
any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
© 2020 The Authors. Haemophilia published by John Wiley & Sons Ltd
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1 | I NTRO D U C TI O N
e273
patient with severe haemophilia were similar to that in the normal
population. They assume that mild infection of SARS-CoV-2 may
Since the end of 2019, a new disease (COVID-19) caused by the
not increase the occurrence of bleeding events in patients with
coronavirus SARS-CoV-2 invaded the whole world. The corona-
haemophilia. 21
virus is responsible for potential fatal respiratory tract infections
Data on worries and concerns related to COVID-19 and mental
accompanied by haemostatic/thrombotic problems and is trans-
health issues in patients with IBD are not available yet. The aim of
mitted via respiratory droplets.1-3 Besides the impact on physical
this survey was to evaluate the impact of COVID-19 on patients and
health, the COVID-19 pandemic has a profound effect on all as-
caregivers of children with IBD (IBD-Group).
pects of society, including mental health.4 Containment measures
to reduce new infections and suppressing the pandemic lead to
social distancing and isolation, cancellation of medical appoint-
2 | M ATE R I A L S A N D M E TH O DS
ments or reduced access to medical and nursing care, pharmacies
and drugs. 5-7 In the general population, the widespread outbreak
This multicentre, cross-sectional survey was designed to evaluate
of an infectious disease and associated containment measures
the impact of COVID-19 pandemic on mental health of patients and
might increase psychological distress and cause symptoms of
caregivers of children with inherited bleeding disorder (IBD-Group).
mental illness and harmful behaviour with additional fears and
The medical psychologist/questionnaire expert developed ad hoc
worries in patients with chronic disorders related to their disease
the survey questionnaire together with haemostasis experts. The
and treatment.
4,8-10
In Germany, different surveys on the impact of
questionnaire included two sections: (a) demographic and clinical
the coronavirus on the perception of the general population have
data related to IBD and contact/infection with COVID-19, (b) impact
been performed. In weekly telephone interviews (24 March 2020-
of COVID-19 and containment measures on mental health in terms
26 May 2020) conducted by the German Federal Institute for Risk
of thoughts, feelings, worries and experiences related to medical
Assessment (BfR-Corona-Monitor), more than 500 Germans per
care. Additional questions from two surveys were included allowing
telephone interview (≥14 years) from private households were
a comparison of some of our findings with the general population
asked on their stance on the corona crisis.11,12 In the online survey
in Germany. Three questions were taken from a representative sur-
of the public radio station ‘Mitteldeutscher Rundfunk’, 12 232 out
vey conducted by the German Federal Institute for Risk Assessment
of 17 000 registered users from East Germany participated (51%
(BfR) (21 April,11 and 28 April 2020
males). This survey was not representative, but was weighted ac-
online survey of the public radio station ‘Mitteldeutscher Rundfunk’
cording to statistical characteristics such as gender, education and
(MDR) (2-3 March 2020) was implemented.13
occupation.13
12
). Another question from the
During lockdown in Germany (22.03.2020-04.05.2020) a pa-
Haemophilia A, haemophilia B (HA, HB) and von Willebrand dis-
per-and-pencil version of the survey was sent together with a pre-
ease type III (VWD type III) are rare inherited bleeding disorders
stamped self-addressed envelope to the IBD-Group. Eligible patients
(IBD). Depending on factor VIII, factor IX and/or von Willebrand
had HA, HB or VWD type III and were treated in five haemophilia
factor (VWF) levels, patients need regular clotting-factor replace-
treatment centres. According to the ethics committee of the Medical
14,15
ment (prophylaxis) or on-demand treatment in case of bleeding.
Faculty of the Ludwig-Maximilians-University Munich, no ethical ap-
Especially, patients with severe forms need regular therapy and con-
proval had to be obtained for the current project (20-431 KB).
sultation from their haemostasis experts.
One of the major concerns of patients with IBD could be how to
maintain access to treatment products and care within the haemo-
2.1 | Data analysis
philia treatment centres (HTCs) during the corona crisis.7,16,17 Home
delivery of treatment products and supplies as well as telemedicine
Statistical analyses were performed using the SPSS program version
bring medical care to patients in order to avoid frequent hospital
25 (Statistical Package for Social Science; IBM®). Data were ana-
18,19
visits and reduce the transmission of COVID-19.
lysed descriptively using contingency tables for categorical variables
Since patients with IBD and any type of severity might be in-
and sample statistics for continuous variables. Data are shown as
fected and develop COVID-19, Hermans et al. proposed practical
mean ± standard deviation, median and range (minimum-maximum),
guidance for the management of hospitalized haemophilia patients
or counts and frequencies according to their distribution. Open-
infected with COVID-19. The authors stressed that besides appro-
ended answers were categorized using mind map. All analyses were
priate medical treatment, patients and their families should be pro-
performed for the total study population (overall analysis) and strati-
vided with information about COVID-19 and offered psychological
fied by age group (adult vs paediatric patients) for differences be-
support. 20
tween the clinical data or by IBD-Group (patients vs caregivers of
Up to now, few data are available on haemophilia patients re-
children) for differences between all other outcomes. Differences of
lated to COVID-19. Clinical data of a severe haemophilia A patient
categorical variables between groups were examined by Pearson's
from China were described in a case report. Cui et al. concluded
chi-square (χ2) test. 22 Correlations were performed using Spearman's
that clinical manifestations and outcomes of this mild COVID-19
rank correlation. P values < .05 were considered significant.
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MACKENSEN et al.
3 | R E S U LT S
viral infections are not likely in children because they correspond
to another era of haemophilia treatment, one child had hepatitis B.
Of the 586 sent questionnaires, 11 were undeliverable. Out of the
None of the IBD patients who were in quarantine due to suspected
575 delivered questionnaires, 355 questionnaires were completed
COVID-19 reported symptoms or had to stay in hospital.
between 16.04.2020 and 06.06.2020 (61.7% response rate); no difference was found between participants who completed the survey
before or after lockdown (10%). The response rate varied across the
centres ranging from 54.2% in the adult centre in Hamburg to 73.3%
3.2 | Possible impact of different illnesses on
IBD group
in the paediatric centre in Munich (Figure 1). Most returned surveys
came from the centre in Duisburg (n = 116).
In a hypothetical question (‘How do you personally assess the possible health effects of the following illnesses on you or your child?’),
respondents were asked to imagine how they would evaluate the possi-
3.1 | Demographic and clinical data
ble health impact of different illnesses on a 5-point Likert scale ranging
from ‘very small’ to ‘very high’. The IBD-Group assessed the possible
Out of 355 respondents, 200 were patients with IBD (56.3%), among
impact on their health or that of their child to be ‘(very) high’ for can-
them 25 paediatric patients (aged 10-17 years) who completed the
cer (51.6%) and bleeding disorder (34.5%). By contrast, the IBD-Group
survey by themselves and 175 were adult patients; 155 were car-
perceived a ‘(very) small’ impact of influenza (59.8%) and coronavirus
egivers of children with IBD (43.7%), among them three caregiv-
(42.1%). These data are comparable to the German BfR survey, asking
ers of adult patients (aged 18-24 years) completed the survey.
a similar question (‘Suppose you have one of the following diseases:
Caregivers had a mean age of 40.71 ± 7.0 years (range 23-63) of
How big or small do you evaluate the health effects of the disease
whom 87.7% were mothers; adult patients (n = 178) had a mean age
for you personally?’); 69% considered influenza and 47% coronavirus
of 42.90 ± 17.3 years (range 18-79) and paediatric patients (n = 177)
would have a ‘(very) small’ impact on their health. In addition, caregiv-
of 8.62 ± 5.0 years (range 0.25-17).
ers thought that the bleeding disorder would have a significantly higher
Clinical data separated for paediatric and adult patients are pre-
impact on the health of their child than patients did (P = .027).
sented in Table 1. Significant differences were found between adult
and paediatric patients for severity (χ2 = 13.590, P = .001), prophylactic treatment, (χ2 = 33.112, P < .0001) and plasma-derived
3.3 | Information concerning novel coronavirus
more other chronic diseases (χ2 = 9.457, P = .002) and viral infec-
As shown in Figure 2, most respondents felt on a 5-point Likert scale
tions (χ = 65.886, P < .0001) compared to paediatric patients. Most
ranging from ‘very bad‘ to ‘very good‘, (very) well informed about the
chronic diseases were asthma (18.8%), allergies (15.6%) and hyper-
novel coronavirus (66.9%), similar to the findings of the German BfR
tension (10.9%); four patients had an additional VWD. Although
survey.11 No differences between caregivers and patients were seen.
products (χ2 = 10.178, P = .038). As expected, adult patients had
2
Questionnaires sent
(n = 586)
Undeliverable
(n = 11)
Questionnaires delivered
(n = 575)
Questionnaires received
(n = 355)
61.7% response rate
Munich (kids)
Duisburg (adults & kids)
Hildesheim (adults & kids)
Hamburg (adults)
Hamburg (kids)
(n = 88)
(n = 116)
(n = 36)
(n = 91)
(n = 24)
73.3%
62.7%
56.3%
54.2%
63.2%
FIGURE 1
Response rate over all centres
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MACKENSEN et al.
TA B L E 1
Variables
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Socio-demographic and clinical data of IBD patients by age group (n = 355)
a
Total (n = 355)
Paediatric patient (n = 177)
Adult patient (n = 178)
N
%
N
N
%
%
p value
Respondents
Caregiver
155
43.7
152
58.9
3
1.7
Patient
200
56.3
25
14.1
175
98.3
328
92.9
164
93.2
164
92.7
12
6.8
13
7.3
Gender
Male
Female
25
7.1
n.s.
Bleeding Disorder
Haemophilia A
262
73.8
127
71.8
135
75.8
Haemophilia B
63
17.7
34
19.2
29
16.3
VWD, type 3
30
8.5
16
9
14
7.9
Mild
87
24.6
38
21.5
49
27.7
Moderate
38
10.7
10
5.6
28
15.8
229
64.7
129
72.9
100
56.5
n.s.
Severity
Severe
.001
Treatment regimen
On-demand
100
28.6
33
18.9
67
38.3
Prophylaxis
224
64
134
76.6
90
51.4
22
6.3
4
2.3
18
10.3
4
1.1
4
2.3
0
-
26
33
19.4
55
32.7
50.3
97
57.1
73
43.5
Switch between on-demand and prophylaxis
ITI
.0001
Product
Plasma-derived
Recombinant
Non-factor replacement
Several products
I don't know
88
170
14
4.1
6
3.5
8
4.8
1
0.3
1
0.6
0
-
65
19.2
33
19.4
32
19
70
20.1
24
13.6
46
26.7
83.5
175
.038
Presence of other chronic disease
Yes
.002
Viral infection
None
293
118
67.4
4
2.3
Hepatitis C
29
8.3
0
-
29
16.6
8
2.3
0
-
8
4.6
16
4.6
0
-
16
9.1
11
3.1
4
2.3
7
4
Several
1
99.4
5
HIV
1.4
0.6
Hepatitis B
.0001
Quarantine due to COVID-19
Yes
n.s.
COVID-19 test
98.9
166
96
Yes, respiratory swab
No
340
9
2.6
97,4
174
2
1.1
7
4
Yes, blood test
0
0
0
-
0
-
0
-
0
-
0
-
n.s.
Stay in hospital due to COVID-19
Yes
a
n.s.
Missing data are not listed; significant differences between groups are listed in bold; n.s.: not significant.
The IBD-Group informed themselves about what is happening
(RKI) (45.9%), as additional source of information 5.7% used social
with the novel coronavirus mainly via (multiple answers were possible)
media. Respondents in the BfR survey informed themselves mainly via
Internet (88.5%), TV (81.4%), radio (58%) and the Robert Koch Institute
TV (77%), Internet (55%), radio (31%) and only 5% via the RKI (5%).12
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MACKENSEN et al.
BfR Survey
IBD Patient Survey
7.1
(54.2%) and whether they can go to the hospital in an emergency
(50.4%). One fifth of the IBD-Group was wondering whether COVID19 can be transmitted through plasma products or blood plasma.
10
Differences between caregivers and patients are shown in Figure 3.
19
26
Caregivers significantly thought more frequently than patients
what happens when their child gets COVID-19 (χ2 = 9.812, P = .002),
whether adequate care continues to be provided in the event of
66.9
bleeding (χ2 = 10.088, P = .001), whether they can go to hospital in
71
emergency (χ2 = 8.850, P = .003) and what happens when their child
is tested COVID-19 positive (χ2 = 7.004, P = .008).
very bad
moderate
very good
3.6 | Feelings caused by the situation of the novel
coronavirus
F I G U R E 2 Level of information about the novel coronavirus
(IBD Survey vs. BfR Survey)
On a 5-point Likert scale ranging from ‘not at all’ to ‘very much’ re-
3.4 | Controllability of the risk of infection due to
coronavirus
garding nine different feelings caused by the current situation with
the novel coronavirus, 66.3% felt overall ‘quite a bit’/‘very much’
concerned. They felt ‘quite a bit’/‘very much’ angry (16.1%), help-
On a 5-point Likert scale ranging from ‘not at all’ to ‘very strongly’,
less (15.5%) or like they are at the mercy of the situation (19.1%),
25.5% of the IBD-Group worried ‘(very) strongly’ about getting the
although 40.1% felt unchanged (Figure 4). Caregivers felt more im-
coronavirus; only 6% of the IBD-Group were ‘not at all’ worried that
paired in most of the feelings compared to patients feeling afraid
they could get the coronavirus. By contrast, 17% of the respondents
(P < .0001), helpless (P < .0001), unsettled (P < .0001) and like they
of the German MDR survey were ‘not at all’ worried.13 No difference
are at the mercy of the situation (P = .005); by contrast, patients felt
was found between caregivers and patients.
more unchanged during the corona crisis than caregivers (P = .008).
3.5 | Thoughts in connection with the novel
coronavirus
3.7 | Worries related to the novel coronavirus
On a 5-point Likert scale ranging from ‘not at all’ to ‘very much’ re-
Among the possible seven thoughts (‘yes’/’no’) related to the situation
garding seven different aspects of worries related to the novel cor-
with the novel coronavirus, overall 92.1% reported some thoughts.
onavirus, half of the IBD-Group reported ‘quite a bit’/‘very much’
Most of them asked themselves what will happen to them when they
overall worries (50.3%). They worried about the current situation in
will get COVID-19 (71.3%), what happens when they will be tested
general (27.8%), that they could get COVID-19 (20.9%) and about de-
COVID-19 positive (68.7%), whether they belong to the risk group
livery difficulties of their IBD treatment product (18.9%). Moreover,
I was wondering ...
64.6
… what happens to me or my child if I or my child get COVID-19
63
… what happens when I or my child are tests COVID-19 positive
… whether I or my child belong to the risk group because of the bleeding
disorder
50.8
43.4
... whether I or my child can go to the hospital in an emergency
41
... whether adequate care continues to be provided in the event of bleeding
... whether the therapy should be adjusted / changed during the corona crisis
(e.g. due to a lack of physical activity)
… whether COVID-19 can be transmitted through plasma products or blood
plasma
76.1
58.7
59.4
58.2
19.8
19.4
19.7
19.5
0
patients
FIGURE 3
79.9
10
20
30
40
50
caregivers
Thoughts of patients and caregivers in connection with the novel coronavirus (n = 355)
60
70
80
90
100
%
|
MACKENSEN et al.
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19.2% worried ‘quite a bit’/‘very much’ about their current financial
with overall worries (r = −.128); and perceived risk of infection cor-
situation and their existence in general (16.3%) (Figure 5). Caregivers
related moderately with overall worries (r = .466).
worried significantly more than patients related to all aspects, other
than that they could get COVID-19.
3.10 | Further thoughts and concerns related
to the novel coronavirus
3.8 | Experiences made during corona crisis
regarding medical care
Table 2 summarizes the categorized open-ended answers related
to the question ‘to what extend do you think COVID-19 could be
The IBD-Group was asked which experiences related to seven
different for you or your child than for other people without bleed-
medical care issues they had made during the corona crisis (‘does
ing disorder?’ Out of the 355 patients/caregivers, 193 answered
not apply’/‘yes’/‘no’). For those who got medical care during the
this question; some gave more than one explanation. Half of the
corona crisis, 65.3% overall had made some experiences. Half of
IBD-Group thought that there is no difference (51.3%); by contrast,
the IBD-Group reported that their medical appointment was post-
almost one quarter (22.6%) believed that COVID-19 might have a
poned (52.8%) or cancelled (45.2%), physiotherapy was interrupted
different symptom pattern; 16.1% were uncertain about the impact
in 38.7%, and only 9% experienced less reachability of their HTC
of COVID-19 on IBD patients.
(Figure 6). No differences between caregivers and patients were reported regarding experiences related to medical care.
225 statements were given by 175 patients/caregivers to the
open-ended question ‘what other concerns do you have in connec-
On a 5-point Likert scale ranging from ‘not at all’ to ‘very good’
tion with the novel coronavirus?’ One quarter mentioned that they
regarding how the IBD-Group felt looked after by their treating phy-
had no further worries (24.4%); main worries were related to health-
sicians, 83.1% felt ‘quite a bit’/‘very well’ looked after by the HTC
care issues (15.5%), societal developments (12.9%) and finances/ed-
and 65.8% by their general practitioner/paediatrician. Caregivers
ucation/job (10.2%).
felt better looked after by their general practitioner/paediatricians
than patients (P = .003).
4 | D I S CU S S I O N
3.9 | Correlation of perceived impact,
knowledge and infection risk of coronavirus and
thoughts, feelings, worries and experiences related to
corona crisis
In total, 355 respondents participated in the survey, of those 200
were patients and 155 caregivers of children with IBD. None had
a COVID-19 infection, and only 11 were quarantined, due to suspicious. Caregivers reported a significantly higher perceived impact of
the bleeding disorder on the health of their child than patients did.
Perceived impact of coronavirus on health correlated highly with
Furthermore, they mentioned more thoughts in connection with the
perceived risk of infection (r = .537) and moderately with overall
novel coronavirus, worse feelings and more worries caused by the
worries (r = .420); perceived knowledge was negatively correlated
current situation. By contrast, more caregivers felt ‘quite a bit’/‘very’
… feeling unchanged
… being angry
… feeling helpless
… feeling unsettled
… feeling afraid
… feeling like I am at the mercy of the situation
… feeling excluded
… feeling lonely
… feeling discriminated
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
not at all
a little bit
somewhat
quite a bit
very much
F I G U R E 4 Feelings caused by the current situation with the novel coronavirus (IBD-Group, n = 355). IBD-Group: patients and caregivers
with inherited bleeding disorder
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MACKENSEN et al.
Due to the novel Corona virus I am worried...
… in general
… about delivery difficul€es of products for the treatment…
… about my current financial situa€on
… about my existence in general
… that I could get COVID-19
… regarding my bleeding disorder or that of my child
… regarding bleeding
0%
not at all
a li le bit
10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
somewhat
quite a bit
very much
F I G U R E 5 Worries related to the current situation with the novel coronavirus (IBD-Group, n = 355). IBD-Group: patients and caregivers
with inherited bleeding disorder
During the corona crisis ...
… doctor's appointments have been postponed
47.2
45.2
… doctor's appointments were canceled
52.8
n=150
61.3
31.4
… appointments for preventive medical check-ups were canceled
n=219
54.8
38.7
… physiotherapy treatment was interrupted
n=233
n=175
68.6
14.5
… planned surgical interventions were postponed
...the haemophilia treatment center is less accessible
9
… drug supply was delayed
7.1
0
yes
10
n=117
85.5
n=210
91
92.9
20
30
40
50
60
70
80
90
n=210
100
%
no
F I G U R E 6 Experiences during the corona crisis (only IBD-Group who got medical care). IBD-Group: patients and caregivers with
inherited bleeding disorder
well looked after by their general practitioner/paediatrician and
recombinant products. Therefore, we conclude that our cohort can
more patients felt ‘quite a bit’/‘very’ much unchanged by the corona
be considered representative for Germany.
crisis.
In this German survey, one quarter (25.5%) of the IBD-Group
The response rate of our cross-sectional study was 61.7% which
(median age 17 years) worried ‘very’/‘strongly’ about the infection
is slightly higher than the average response rate of 55.6% which
risk with the coronavirus, compared to 97% of another older (median
was examined across 175 different studies. 23 Although we had
age 72 years) German cohort of patients with Parkinson's disease
a relatively high response rate, we wanted to know, whether our
(PD)25 and 24% in the German general population13 as well as 47.5%
data can be considered representative for German IBD patients.
in the general population of the UK. 26 In this representative survey,
Therefore, we compared our IBD cohort with available data of hae-
28.9% of respondents expected that the coronavirus would be se-
mophilia patients included in the German Haemophilia Registry
vere/life-threatening for them, 26 which is comparable to our survey
(DHR = Deutsches Hämophilie Register)
24
held by the German Paul-
in which 25.3% of the IBD-Group perceived that the coronavirus
Ehrlich-Institut, a Federal Institute for Vaccines and Biomedicine, in
would have a ‘very’/‘high’ impact on their health, which is similar
which 4 666 haemophilia patients are registered for 2018 (updated
to the findings of the BfR survey (29%)11,12; by contrast, 94.9% of
information on 4 June 2020). According to these data, our cohort
the PD patients believed that the coronavirus is dangerous. 25 In our
is comparable to the DHR cohort related to proportion of haemo-
survey, 0.9% of the IBD-Group worried about death, what is lower
philia A and B, distribution of severity and use of plasma-derived and
compared to a survey in UK and US general populations; the median
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MACKENSEN et al.
TA B L E 2 How the IBD-Group
perceived COVID-19 to be different for
them compared to other people without
bleeding disorder (n = 193)
Perceptions (specified)
Subcategory
Not different
Different related to … (n = 45;
22.6%)
Uncertain (n = 32; 16.1%)
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N = 199
%
102
51.3
Blood / bleeding / factor
13
6.5
Lung / breathing / coughing / asthma
13
6
Without explanation
8
4
Immune system / infections
5
2.5
Haemophilia-specific previous
illnesses
4
2
Other pre-existing conditions
2
1.1
Not knowing
16
8
Not yet considered
9
4.5
Different concerns
7
3.5
Related to medical supplies
13
6.5
Related to subjective disease theories
5
2.5
Related to financial worries
2
1.1
Note: IBD-Group: patients and caregivers with inherited bleeding disorder
estimate for the probability of a fatal course of COVID-19 infected
associated with health anxiety, financial worry and social support,
patients was 3% (UK) and 5% (US). 27
but was negatively associated with loneliness.30 In an Italian survey in
Most of the IBD-Group felt ‘very/well’ (66.9%) or ‘moderately’
1 183 adults, participants worried mostly about the risk of infecting
informed (26%) about COVID-19 comparable to German PD patients
their family members, friends and co-workers; worries and concerns
(70.7% and 16.2%, respectively)25 and to the German general pop-
were found to be positively correlated with perceived knowledge
ulation (71% and 19%, respectively).11 Most PD patients (94.9%)
about COVID-19.31 By contrast, in our German IBD-Group worries
received their information about the novel coronavirus from televi-
and thoughts were negatively correlated with perceived knowledge.
sion, similar to the German general population (77%),12 while most
A limitation of our study is the anonymous design which was
respondents of the IBD-Group informed themselves via Internet
chosen to be able to start immediately with the survey. Regarding
(88.5%) and TV (81.4%), and only 5.7% mentioned social media. By
clinical information, it would be preferable to collect these data di-
contrast, more than 80% out of 4 872 Chinese citizens reported that
rectly from patient charts in the HTCs, since patients often cannot
they were frequently exposed to social media during the novel coro-
respond to these questions appropriately, for example 19.2% of the
navirus crisis, which was associated with a high prevalence of mental
respondents did not know which type of product they use. Another
health problems in terms of anxiety and depression. 28
limitation is that only five centres participated in the survey; since
German patients with PD reported anxiety and worries about
we wanted to assess the impact of the COVID-19 pandemic during
the current situation (58.6%); mainly related to fear of infection with
lockdown in Germany, only those centres were included who were
coronavirus, general uncertainty, economic and social development
willing to send the questionnaires to their patients in the same time
and possible loss of medical care. 25 63.2% of PD patients reported
frame in order to have a comparable situation related to the co-
that regular physiotherapy was cancelled compared to 38.7% of
rona crisis. Since our data were derived from some of the biggest
the IBD-Group with interrupted physiotherapy and 45.2% can-
HTCs and were comparable to the DHR cohort, our findings can
celled doctor appointments. More IBD patients thought that they
be considered representative for German IBD patients, but are not
would belong to the risk group (54.2%) compared to one third of PD
generalizable for the German general population or other ethnic
patients.
25
populations.
In a Chinese cross-sectional study in the general population,
Since containment measures may not increase mental health
52.1% reported that they felt horrified and apprehensive by the
presentations but can cause further worries and concerns in the
coronavirus, 29 compared to 50.3% in the IBD-group who worried
upcoming months,32 we would recommend to perform a follow-up
overall. 76.8% of Chinese respondents mentioned that they did not
survey on the impact of COVID-19 after the release from isolation.
experience increased financial stress during the corona crisis29 com-
Although patients with IBD may not be at higher risk, haemostasis
pared to the IBD-Group who did not worry about their current fi-
specialists may be involved in the emergency and intensive care
nancial situation (57.5%) or their existence in general (67.7%).
of patients with COVID-19 and also might develop post-traumatic
Despite the novel coronavirus 40.1% of the IBD-Group felt un-
stress by themselves. Future studies should take this aspect also into
changed, 69.3% did not feel helpless compared to 53.3% of Chinese
consideration.33 We would like to extend our survey to more centres
respondents.
29
A nationwide US study among adults demonstrated
that the perceived impact of COVID-19 on daily life was positively
and countries identifying centre- and country-specific differences
with regard to the impact of COVID-19 on IBD patients.
e280
|
MACKENSEN et al.
5 | CO N C LU S I O N
Patients with chronic diseases such as inherited bleeding disor-
7.
ders are impacted by the corona pandemic in terms of medical
care, thoughts and worries related to their underlying disease and
8.
feelings caused by the novel coronavirus in general. Caregivers
of children with IBD are more concerned than patients. Higher
knowledge about COVID-19 among IBD patients may reduce
worries and concerns and HTC should educate their patients accordingly. Because long-term effects of the pandemic on mental
9.
10.
health of IBD patients are unknown, they should be examined in
the follow-up.
11.
AC K N OW L E D G E M E N T S
We would like to thank all patients and caregivers of children with
inherited bleeding disorders for their participation in this survey.
12.
We also thank Yves Douma who clustered the open-ended answers
using mind mapping. Open access funding enabled and organized by
13.
Projekt DEAL.
D I S C LO S U R E S
14.
All authors have indicated that they have no financial relationship
relevant to this article to disclose.
AU T H O R C O N T R I B U T I O N
SvM designed the study, developed the survey questionnaire and
performed statistical analysis. MO recruited patients, reviewed an-
15.
16.
17.
swer sheets, contributed to data analysis. SvM and MO drafted the
initial manuscript. SH, CW, KH and WH recruited patients and critically revised the manuscript. MS, KH, MO and SvM inserted data. All
authors approved the final version of the manuscript.
Sylvia von Mackensen
Katharina Holstein
Martin Olivieri
19.
20.
ORCID
Susan Halimeh
18.
https://orcid.org/0000-0002-5926-0478
https://orcid.org/0000-0001-8596-9870
https://orcid.org/0000-0003-3753-0972
21.
https://orcid.org/0000-0001-6434-6244
22.
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How to cite this article: von Mackensen S, Halimeh S, Siebert M,
et al. Impact of COVID-19 pandemic on mental health of
patients with inherited bleeding disorders in Germany.
Haemophilia. 2020;26:e272–e281. https://doi.org/10.1111/
hae.14130