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Abstract Objectives: This study aimed to confirm the tendency for parents to underestimate the severity of symptoms and the poor consistency between parents’ reports of symptoms and the physicians’ evaluation of asthma control. Additionally, the relationship between parents’ asthma knowledge and their report of symptoms and estimation of asthma severity was explored. Methods: Fifty children (M¼10.5 years) and their caregivers were recruited from two Portuguese hospitals. A measure of asthma symptoms report (Severity of Chronic Asthma, SCA) and a subjective evaluation of asthma severity were collected and compared with physicians’ ratings of asthma control, as well as parents’ knowledge about asthma (Asthma Knowledge Questionnaire, AKQ) and emotional disturbance (Brief Symptom Inventory, BSI). Results: Although parents’ evaluation of perceived asthma severity was moderately correlated to symptoms reported, results confirm an inconsistency between parents’ reports of symptoms, their subjective rating of asthma severity and the physician’s rating of clinical control, revealing a tendency for parents to underestimate disease severity and to underreport asthma symptoms. Asthma knowledge was not significantly correlated to SCA or to parents’ subjective evaluation of asthma severity. Parents with poorer knowledge reported fewer symptoms. Conclusions: Portuguese parents revealed a tendency to overestimate their child’s level of asthma control and a low level of asthma knowledge. Parents’ education, psychological disturbance and time since diagnosis were associated with asthma knowledge. Parents’ knowledge was not related to the child’s asthma outcomes or to their subjective evaluation of asthma severity or symptoms reports. Parents’ asthma knowledge deficits, underreporting of symptoms and underestimation of asthma severity, may affect parent–provider communication and impede asthma control.
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2013
http://informahealthcare.com/jas
ISSN: 0277-0903 (print), 1532-4303 (electronic)
J Asthma, 2013; 50(9): 1002–1009
!2013 Informa Healthcare USA, Inc. DOI: 10.3109/02770903.2013.822082
EDUCATION
Asthma knowledge, subjective assessment of severity and symptom
perception in parents of children with asthma
Cla
´udia Mendes Silva, MA
1
and Luı
´sa Barros, PhD
2
1
Department of Psychology and Education, University of Beira Interior, Covilha
˜, Portugal and
2
Faculty of Psychology, University of Lisbon,
Lisbon, Portugal
Abstract
Objectives: This study aimed to confirm the tendency for parents to underestimate the severity
of symptoms and the poor consistency between parents’ reports of symptoms and the
physicians’ evaluation of asthma control. Additionally, the relationship between parents’
asthma knowledge and their report of symptoms and estimation of asthma severity was
explored. Methods: Fifty children (M ¼10.5 years) and their caregivers were recruited from two
Portuguese hospitals. A measure of asthma symptoms report (Severity of Chronic Asthma, SCA)
and a subjective evaluation of asthma severity were collected and compared with physicians’
ratings of asthma control, as well as parents’ knowledge about asthma (Asthma Knowledge
Questionnaire, AKQ) and emotional disturbance (Brief Symptom Inventory, BSI). Results:
Although parents’ evaluation of perceived asthma severity was moderately correlated to
symptoms reported, results confirm an inconsistency between parents’ reports of symptoms,
their subjective rating of asthma severity and the physician’s rating of clinical control, revealing
a tendency for parents to underestimate disease severity and to underreport asthma
symptoms. Asthma knowledge was not significantly correlated to SCA or to parents’ subjective
evaluation of asthma severity. Parents with poorer knowledge reported fewer symptoms.
Conclusions: Portuguese parents revealed a tendency to overestimate their child’s level
of asthma control and a low level of asthma knowledge. Parents’ education, psychological
disturbance and time since diagnosis were associated with asthma knowledge. Parents’
knowledge was not related to the child’s asthma outcomes or to their subjective evaluation
of asthma severity or symptoms reports. Parents’ asthma knowledge deficits, underreporting
of symptoms and underestimation of asthma severity, may affect parent–provider
communication and impede asthma control.
Keywords
Asthma control, Brief Symptom Inventory,
caregivers, child’s asthma, disease
knowledge, perceived severity, symptoms
reports
History
Received 22 March 2013
Revised 24 June 2013
Accepted 30 June 2013
Published online 9 August 2013
Introduction
Asthma is one of the most common chronic diseases in
children, and its prevalence is increasing in developed
countries [1–3]. Asthma is associated with high morbidity,
leading to a high rate of emergency department visits, and
is the most common cause of hospitalization in chronically ill
children in Portugal [4,5].
There is a considerable variation in asthma symptoms over
time, with different daily and seasonal symptom patterns, and
among individuals. Even in mild cases, both the symptoms
and the treatments interfere with the daily activities of
patients and their families [6,7]. Asthma management should
include a comprehensive treatment plan that incorporates
preventive actions (avoidance of allergens and triggers),
appropriate pharmacotherapy, particularly anti-inflammatory
agents, and asthma education programmes for patients and
parents [8]. The ultimate goal of this treatment plan is to
achieve long-term asthma control.
Childhood asthma control is largely affected by family
factors, such as family asthma management strategies [9,10].
The highly variable nature of asthma symptoms implies that
parents need to closely monitor symptoms and make asthma
management decisions and actions on a daily basis [8,11].
Effective care also requires that caregivers accurately report
the pattern of symptoms and medication use to physicians.
Treatment for asthma is usually guided by patients’
perceptions of their symptoms [12–14]. Research has revealed
a low accuracy rate in the perception of asthma severity, both
in adult patients and in parents of paediatric patients [15,16].
Yoos et al. [14] studied the accuracy of parent’s and children’s
reports on asthma and found that more than one-third of
families made clinically significant errors in judging symp-
tom severity. In addition, Stout et al. [17] confirmed that
relying only on symptom frequency, to classify asthma
severity, underestimates the number of children with moder-
ate-to-severe persistent asthma.
Inaccurate symptom perception has also been identified
as a contributing factor to asthma morbidity, as it hinders
Correspondence: Cla
´udia Mendes Silva, Department of Psychology and
Education, University of Beira Interior, Estrada do Sineiro, 6200-209
Covilha
˜, Portugal. E-mail: cmsilva@ubi.pt
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subsequent asthma management strategies. Fritz et al. [12]
found that children who did not accurately recognize changes
in their pulmonary function had more asthma-related mor-
bidity, than those who perceived these changes more accur-
ately. McQuaid et al. [13] confirmed that the tendency to
underestimate asthma symptoms was modestly associated
with concurrent asthma morbidity. In addition, accurate
symptom perception by children was associated with a greater
functional family response to asthma symptoms, which
enabled them to get more appropriate treatment [13]. This
underestimation of asthma symptoms can lead to insufficient
treatment and, presumably, to the acceptance of asthma
symptoms and activity limitations as normal consequences
of the disease.
Adherence to prescribed medical regimens is another
major family responsibility in the management of asthma
[18]. However, research has shown that adherence to
preventive medications remains a significant problem in
paediatric asthma [19–21]. Lack of knowledge about asthma
has been associated with decreased adherence to prescribed
treatment plans [19,22]. Some knowledge and understanding
about asthma, including knowledge of triggers and symptoms,
preventive strategies, medication and specific attack manage-
ment protocol is frequently assumed to be a pre-requisite for
the development of adequate asthma management skills [23].
Nevertheless, several studies found no association between
asthma knowledge and treatment adherence both in children
[20] and in parents [23,24].
On the other hand, asthma education programmes that
effectively led to significant reductions in children’s asthma
morbidity [25–27], and significant reductions in hospitaliza-
tions and emergency department visits due to acute asthma
episodes [28,29], were associated with an increase in parents’
asthma knowledge. Thus, an understanding of the importance
of asthma knowledge for parental disease management seems
to be critical to improve asthma control in children.
There is also some evidence that parents’ psychological
functioning may affect the course of the disease [30],
medication adherence [31], asthma control [10], hospitaliza-
tions [32] and symptom reports [33].
This study had two main objectives. Firstly, we intended to
confirm the tendency for parents to underestimate the severity
of symptoms and the poor consistency between parents’
reports of symptoms and the physicians’ evaluation of asthma
control, using Global Initiative for Asthma (GINA) criteria.
Secondly, we wanted to explore the relationship between
parents’ knowledge about asthma and their ability to accur-
ately report their child’s symptoms and estimate asthma
severity. We hypothesized that improved knowledge would be
associated with a more accurate perception of severity and
identification of symptoms. Additionally, we aimed to explore
the impact of psychological disturbance on these dimensions.
Methods
Participants
Parents of children aged 7–13 years with a clinical diagnosis
of persistent asthma and diagnosed at least 6 months
prior, from outpatient paediatric allergology services in two
Portuguese hospitals, were invited to participate in the study.
Children with a significant developmental delay or other
chronic conditions implying significant medical care were
excluded.
The final sample included 50 children and their primary
family caregiver. Children’s mean age (M) was 10.5 years
[range 7 years; 0 months to 13 years; 8 months, standard
deviation (SD) ¼2.07 years], and 29 (58%) were boys
(Table 1).
Most caregivers, referred to as parent, were mothers
(n¼44), five were fathers and one was the child’s grand-
mother. Parents were between 29 and 54 years old (M ¼40.2;
SD ¼5.29). The education level ranged from primary educa-
tion (n¼2) to higher education (n¼13), and 36% had
completed high school education. The majority (86%) were
married or lived with their partner. Eighteen parents reported
having a chronic health condition themselves, mostly asthma
(n¼7) and rhinitis (n¼3).
Procedures
After formal authorizations were obtained from the Ethics
Committees at both hospitals, parents were approached.
Following a comprehensive description of the project, parents
signed an informed consent form and children gave their
verbal agreement. Sociodemographic and clinical information
was collected at that moment.
Measures
Sociodemographic and clinical questionnaire
To collect information about the caregiver, the child and the
clinical process (age at initial asthma diagnosis, prescribed
medication, number of hospitalizations and asthma exacer-
bations) parents were asked to fill out a questionnaire.
Severity of Chronic Asthma
Severity of Chronic Asthma (SCA) [34] is an instrument to
assess asthma severity according to GINA guidelines, from
the parents’ perspective. The SCA consists of three items
asking the parent to rate the frequency of (i) daytime asthma
symptoms, (ii) nights with sleep disturbances due to asthma
and (iii) days with activity limitations due to asthma, during
the past month, using a four-point ordinal response scale.
Global value allows four categories of asthma severity:
intermittent, mild persistent, moderate persistent and severe
persistent, based on the parents’ highest ratings on any of the
three items of the SCA [34]. Convergent validity was found
between the SCA and other measures related to asthma
severity [34]. This questionnaire was translated into
Portuguese and revised by an asthma specialist.
Table 1. Distribution of children with asthma by gender and age.
Children with asthma
Age (years; months) Female Male Total n(%)
7;0–9;11 7 11 18 (36)
10;0–11;11 6 11 17 (34)
12;0–13;8 8 7 15 (30)
Total n(%) 21 (42) 29 (58) 50
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Additionally, parents were asked to rate the perceived
severity of their child’s asthma during the last year, using
a five-point ordinal response scale (‘‘nothing serious’’ to
‘‘extremely serious’’).
Level of asthma control
The child’s physician assessed asthma control according to
GINA guidelines [35], in three categories: ‘‘controlled’’,
‘‘partly controlled’’ or ‘‘uncontrolled’’. Updated guidelines
emphasize asthma management based on clinical control,
rather than asthma severity [35,36]. Asthma control refers
to the control of clinical manifestations of the disease and
its assessment is based on daytime symptoms, limitation of
activities, nocturnal symptoms, reliever medication use and
patient’s lung function. Asthma is classified as clinically
controlled if the child has had no or few symptoms per week,
a normal lung function and no asthma exacerbation during the
last year [35].
Asthma Knowledge Questionnaire
Asthma Knowledge Questionnaire (AKQ) [23,37] is a
25-item knowledge questionnaire about asthma, completed
by parents, to evaluate knowledge which is particularly
relevant for paediatric asthma management, including know-
ledge about symptoms, triggers and interventions. In valid-
ation studies, AKQ revealed low but adequate internal
consistency (Cronbach’s alpha, a¼0.69) [23]. A principal
component analysis generated nine factors, accounting for
63.4% of the overall variance, showing that AKQ is not
unidimensional [23]. In the Portuguese validation study,
Cronbach’s alpha was 0.71, and parents obtained a mean score
of 14.3 (SD ¼3.3) [37].
Brief Symptom Inventory
Brief Symptom Inventory (BSI) [38–40] was used to screen
for parents’ emotional disturbance. BSI is the short version for
SCL-90, and is a 53-item self-report scale used to measure
nine symptom dimensions (somatization, obsessive–compul-
sive behaviour, interpersonal sensitivity, depression, anxiety,
hostility, phobic anxiety, paranoid ideation and psychoticism),
and three global indices [Global Severity Index (GSI),
Positive Symptom Distress Index (PSDI) and Positive
Symptom Total (PST)]. In the Portuguese validation, for
most of the BSI subscales Cronbach’s alpha revealed good
internal consistency, between 0.7 and 0.8, except for phobic
anxiety and psychoticism, which both had lower alphas of
0.62 [40]. A PSDI score 1.7 is likely to correspond to
emotionally disturbed people [40].
Analysis
Data analyses were performed using the Statistical Package
for Social Sciences (SPSS, version 19.0). Item frequencies
were calculated to describe the pattern of responses obtained
in AKQ. As AKQ’s total score followed a normal distribution
(Shapiro–Wilk test: sw ¼0.961, p¼0.105), Pearson’s pro-
duct-moment correlations were computed in order to assess
the association between this variable and continuous variables
(time since asthma diagnosis, PSDI) and Spearman’s rank
correlation coefficients with ordinal variables. A Kruskal–
Wallis test was used to examine if AKQ scores were different
across categories of perceived asthma severity. Student’s t-test
was conducted to compare the AKQ scores for two severity
categories and for two asthma control groups. To analyse the
agreement between parents’ report of symptoms and
perceived severity, and between these and the control of
child asthma assessed by the physician, was used Kendall’s
tau coefficient. All statistical analyses were conducted for a
confidence interval of 95%.
Results
Sample characteristics
Fifty children with asthma and their caregiver participated
in the study. All children had been diagnosed with asthma for
46 months, and 76% for 45 years. Children had attended
the present outpatient service for a period of 1 month to 11
years (M ¼3.95; SD ¼3.09). Eighty-eight percent of children
were on prescriptions of asthma controller medication,
essentially anti-inflammatory agents for daily use. The other
12% were currently only on reliever medication. According
to parental reports, 36% of children had been hospitalized for
asthma at least once and 64% of children had had two or more
asthma exacerbations during the last year (Table 2).
Based on the asthma symptoms reported by parents, most
children had either intermittent (46%) or mild persistent
asthma (40%). Twenty-six percent of parents evaluated child’s
asthma severity in the subjective scale as nothing serious (1),
18% as somewhat serious (2), 40% as more or less serious (3)
and the other 16% as quite serious (4). Clinicians’ assessments
classified 38% of children as having a controlled asthma, 36%
Table 2. Clinical characteristics of children with asthma.
Children with asthma (n¼50)
Clinical characteristics Frequency %
Time since diagnosis
52 years 5 10
2–5 years 7 14
5–10 years 30 60
10 years 8 16
No. of asthma exacerbations (last year)
None 8 16
11020
2816
32448
SCA: symptoms severity (by parents)
Intermittent (1) 24 48
Mild persistent (2) 20 40
Moderate persistent (3) 4 8
Severe persistent (4) 2 4
Perceived severity (by parents)
Nothing serious (1) 13 26
Somewhat serious (2) 9 18
More or less serious (3) 20 40
Quite serious (4) 8 16
Very serious (5) 0 0
Asthma control (by Physician)
a
Controlled 19 38
Partly controlled 18 36
Uncontrolled 12 24
a
In one case, physician did not classify the level of control of child’s
asthma.
1004 C. M. Silva & L. Barros J Asthma, 2013; 50(9): 1002–1009
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as having a partly controlled asthma and the remaining 24%
of children as having an uncontrolled asthma.
Asthma knowledge
A Cronbach’s alpha of 0.57 was obtained for AKQ. This low
alpha value may be partly explained by the multidimension-
ality of the scale and by the different degree of difficulty and
variability of the items, and is not uncommon in knowledge
questionnaires [41].
Parents’ correct answers ranged from 28 to 84% in the
AKQ. Items with the highest rate of correct answer were
related to triggers, symptoms of an asthma attack, treatment,
consequences and evolution of asthma. The three items with
the lower rate of correct responses were related with the
function of the peak flow meter, bronchodilator medication
and the concept of allergen (Table 3).
Associations between parents’ reports of symptoms,
perceived severity and asthma control
SCA revealed a Cronbach’s alpha coefficient of 0.56 in this
sample, slightly higher than in the original study (a¼0.44)
[34]. These low results are not unexpected due to the
multidimensionality of the few items of this scale [34].
The inter-item correlation, between 0.27 and 0.39, may be
considered good [42].
A crosstab of symptoms severity and perceived severity by
the level of control rated by the physician is presented in
Table 4. Among the 12 cases classified by the physician
as uncontrolled asthma, nine parents reported none or few
asthma symptoms and four parents perceived their child’s
asthma as nothing serious.
Parents’ subjective evaluation of perceived asthma severity
was moderately correlated to symptoms reported in SCA
(¼0.45, p¼0.000), but was not associated with the level
of asthma control assessed by the physician (¼0.09,
p¼0.479). Thirty-three percent of children with asthma that
were classified by the physician as clinically uncontrolled
were evaluated by parents as having asthma which was
‘‘nothing serious’’. Symptoms severity reported by parents
was also not significantly associated with asthma control
(¼0.13, p¼0.320). In 75% of cases identified by the
physician as uncontrolled asthma, parents reported no or very
few symptoms.
As shown in Table 5, only 22 parents (44.9%) reported a
level of symptoms in accordance with the level of control
Table 3. Correct response rates in AKQ items [23,37].
AKQ Correct answers n(%)
3. Smoking in the home can make a child’s asthma worse. 50 (100)
6. If you start to have an asthma attack, you might notice a tight feeling in your chest before wheezing starts. 49 (98)
13. With appropriate treatment, most children with asthma should lead a normal life with no restrictions on activities. 49 (98)
11. For some people, asthma becomes less severe as they get older. 47 (94)
16. Children with asthma should not play sports in which they have to run a lot. 44 (88)
5. Keeping an asthma attack from happening is something only a doctor can do. 43 (86)
23. Some asthma medications don’t work unless you take them every day. 42 (84)
9. Asthma is an emotional or psychological disease. 40 (80)
4. Asthma attacks can happen when you breathe things such as paint fumes, gasoline, smoke or pollution. 39 (78)
14. Anger, crying or laughing can start an asthma attack. 36 (72)
2. Asthma is due to inflammation in the lungs. 35 (70)
12. Doctors are not really sure why some people have asthma, but they know what can start an attack. 35 (70)
15. If you don’t have asthma by the time you are 40 years old, you will never get it. 35 (70)
25. Fewer people have asthma today than 10 years ago. 32 (64)
21. Fish and birds are both good pets for a child with asthma. 31 (62)
10. Most children with asthma have to go to the hospital for asthma attacks. 27 (54)
19. It is possible for your asthma to be worse without noticing a change in your breathing. 27 (54)
1. Coughing is not a symptom of asthma. 26 (52)
8. If asthma symptoms such as tightness and wheezing do not occur for several years, a child has outgrown his/her asthma. 24 (48)
24. You don’t need to shake most asthma medication inhalers before using them. 24 (48)
20. Exercising in cold weather can start an asthma attack. 22 (44)
17. In young children, asthma sometimes starts after a viral respiratory illness. 19 (38)
18. An allergen is the antibody missing in people with asthma. 9 (18)
22. A rescue inhaler (i.e. bronchodilator) is taken to reduce inflammation in the lungs. 5 (10)
7. A peak flow meter is used to make sure your sinuses are open. 3 (6)
Total score M ¼15.86 (SD ¼3.04)
Table 4. Distribution of symptoms severity and perceived severity by levels of asthma control.
SCA: symptoms severity Perceived severity
Levels of control
a
1 2 3 4 12345Total
Controlled 10 6 3 0 5 4 8 2 0 19
Partly controlled 9 9 0 0 3 5 7 3 0 18
Uncontrolled 4 5 1 2 4 0 5 3 0 12
Total 23 20 4 2 12 9 20 8 0 49
a
In one case, physician did not classify the level of control of child’s asthma.
DOI: 10.3109/02770903.2013.822082 Asthma knowledge, severity and symptom perception 1005
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For personal use only.
assessed by the clinician, and under-evaluation of symptoms
was the most common error in parents’ reports of symptoms
(18 parents; 36.7%).
Relationship between parents’ asthma knowledge,
education and duration of disease
There was a significant positive correlation between asthma
knowledge, measured by AKQ, and education level of parents
(¼0.48, p50.001). Additionally, parents of children with
an asthma diagnosis for a longer period of time had better
knowledge of the disease (r¼0.30, p50.05) (Table 6).
Relationship between parents’ asthma knowledge
and emotional disturbance
Asthma knowledge was negatively related to the PSDI of BSI
(r¼0.30, p50.01), with parents with lower asthma know-
ledge scores revealing more psychopathology symptoms.
Although we found different AKQ score means in parents
with a PSDI51.7 (M ¼16.18, SD ¼2.56) and parents with
a PSDI 1.7 (M ¼14.64, SD ¼4.34), such that parents with
higher emotional disturbance demonstrated lower asthma
knowledge, this difference did not reach statistical signifi-
cance in this sample [t(47) ¼1.49, p¼0.14].
Relationship between parents’ asthma knowledge
and children’s asthma
Analyses of the association between parents’ knowledge
and asthma morbidity variables showed that AKQ scores
were not associated with any 12-month asthma outcomes,
including number of asthma exacerbations (¼0.19,
p¼0.187) and the number of missed school days (¼0.05,
p¼0.729) (Table 6).
Relationship between parents’ asthma knowledge,
reports of symptoms, perceived asthma severity
and asthma control
Asthma knowledge score was not significantly correlated
with SCA total score (¼0.18, p¼0.215). However, AKQ
total score was associated with the number of nocturnal
symptoms, one of the items of SCA (¼0.29, p50.05).
Given the small number of cases in some asthma severity
categories defined by parents’ reports of symptoms in SCA,
we collapsed the data into two categories of severity, one
with cases classified as intermittent and mild persistent
asthma, and the other with moderate and severe asthma. We
performed an independent-samples t-test to compare AKQ
mean scores for these two severity categories. There was a
significant difference in mean scores between parents that
reported a higher level of symptoms (M ¼18.33, SD ¼2.50)
and parents that reported a lower severity of asthma
symptoms [M ¼15.52, SD ¼2.97; t(48) ¼2.21,
p¼0.032], with parents that reported more symptoms
showing a higher level of asthma knowledge. The magnitude
of the differences in the AKQ means (mean differ-
ence ¼2.81) was moderate (
2
¼0.092).
Asthma knowledge was not correlated with parents’
subjective evaluation of asthma severity (¼0.05,
p¼0.713). Nevertheless, the crosstab of level of knowledge
with parents’ perceived asthma severity categories showed
that AKQ mean score is lowest in the group that considers
asthma not at all serious. The independent-samples Kruskal–
Wallis test confirms that the distribution of AKQ scores is
different across categories of perceived asthma severity
(significance level of 0.05).
To explore if parents’ knowledge was related to asthma
control assessed by the physician, a Spearman’s correlation
was calculated, revealing that there is no significant associ-
ation between these two variables (¼0.162, p¼0.265).
In addition, collapsing the data into two groups, one with
children with controlled asthma and the other with partly
controlled or uncontrolled asthma, no significant difference
in AKQ mean scores was found for these two asthma control
groups [t(47) ¼1.09, p¼0.283].
Discussion
This study aimed to confirm the tendency for parents to
underestimate the severity of paediatric asthma symptoms and
the poor consistency between parents’ reports of symptoms
and physicians’ ratings of asthma control.
Results showed a moderate association between subjective
ratings of asthma severity and the severity of symptoms
reported by parents. This finding is consistent with other
studies, which found a high rate of inconsistency between
parents’ assessment of asthma control and the symptoms they
reported. The majority of parents overestimated their child’s
level of control of asthma symptoms in a global assessment,
when compared to their answers to specific questions about
the frequency of daytime or night time symptoms [43,44].
Table 6. Correlations of AKQ total score with parents’ and clinical
variables.
AKQ total score
Parents’ variables Correlation pValue
Parents education level 0.48 50.001
BSI: PSDI 0.30 0.007
Clinical variables
Time elapsed since asthma diagnosis 0.30 0.036
SCA: total score 0.18 NS
SCA: nocturnal symptoms 0.29 0.04
Perceived severity of asthma 0.05 NS
Level of asthma control 0.16 NS
No. of exacerbations in last year 0.19 NS
No. of missed school days 0.05 NS
NS, not significant.
Table 5. Distribution of the categories of congruence between parental
report of asthma symptoms (SCA) and asthma control by the levels of
asthma control.
Congruence SCA:
level of control
a
Congruence
Under-
evaluation
Over-
evaluation Total
Controlled 10 0 9 19
Partly controlled 9 9 0 18
Uncontrolled 3 9 0 12
Total 22 18 9 49
a
In one case, physician did not classify the level of control of child’s
asthma.
1006 C. M. Silva & L. Barros J Asthma, 2013; 50(9): 1002–1009
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An international assessment of asthma management in
children and adults, involving 29 countries in North
America, Europe and Asia, confirmed a worldwide discrep-
ancy between the level of reported symptoms and patients’
perception of asthma control [6]. This generalized tendency
for patients to overestimate control and underestimate severity
suggests an acceptance of symptoms as inevitable conse-
quences of their disease [6]. Dozier et al. [44] highlight that
children with uncontrolled asthma, which is incorrectly
perceived as well controlled by parents, are at great risk for
asthma morbidity.
Parents’ reports of severity of asthma symptoms in SCA
were not associated with the physician’s rating of clinical
control, with parents tending to underestimate disease sever-
ity. This may be partly explained by the fact that SCA refers
to the evaluation of symptoms in the last month, while the
assessment of control by the physician takes into account
not only data concerning symptoms in the last month, but
also information relating to the last year (e.g. number of
asthma exacerbations). Nevertheless, asthma symptoms are
not always obvious [8] and this inconsistency may reflect
parent’s difficulty in recognizing and monitoring children’s
asthma symptoms. Consistent with this last interpretation
of our results, Yoos et al. [14] found that only one-third of
parents were accurate in the evaluation of severity when
objective measures showed impairment of pulmonary func-
tion, and that the most common error was to underestimate
symptom severity. In addition, Stout et al. [17] reported that
frequency of symptoms indicated by parents underestimates
asthma severity, suggesting the use of a measure of pulmon-
ary function in addition to symptom reports to rate asthma
severity. Possibly, this lack of agreement found between
parents’ symptom report and the physician’s rating of asthma
control, also demonstrates the clinicians’ awareness of parents
inaccurate reporting of children’s symptoms and their use of
other clinical indicators of asthma, showing that physicians
do not rely exclusively on parents’ reports.
As expected, parents’ subjective and more global rating of
asthma severity was also not associated with the physician’s
assessment of clinical control of children’s asthma, showing
no inter-rater agreement between parents and physicians
about evaluation of clinical manifestations of child’s asthma.
This poor correlation between patients’ perceived severity
of asthma and objective assessment of severity based on
GINA criteria was found in different countries [6]. This high
disagreement rate may confirm the different existing inter-
pretations or beliefs about asthma and its manifestations.
Similarly, other authors stated that parents and patients with
asthma appear to use different measures than physicians to
define asthma severity [45]. Additionally, parental expect-
ations of what constitutes good symptom control were modest
[46].
In relation to parents’ asthma knowledge, we found that
the AKQ mean score in this sample is slightly higher than
the AKQ mean score in a previous Portuguese study [37],
but much lower than the one found in the original study of
this questionnaire [23], revealing poorer levels of basic
factual knowledge of asthma in Portuguese parents. Although
all children were followed by a specialist in a paediatric
allergology service, results showed that knowledge about
asthma varied widely, with some parents demonstrating a very
limited knowledge of the illness and others being able to
answer almost every question correctly. Important knowledge
deficits were found in areas such as the mechanism of rescue
medication, the function of the peak flow meter, the role of
trigger agents in asthma exacerbations, the acknowledgment
of asthma as a chronic condition, the recognition of coughing
as a symptom of asthma, the possibility that asthma worsens
without noticing a change in the child’s breathing and the
possibility of controlling asthma exacerbations. These def-
icits in asthma knowledge have been documented in others
studies, where parents demonstrated poor knowledge about
trigger factors [37,47], the role of different medications
[19,37,47,48], the function of the peak flow meter and the
concept of allergens [37].
Asthma knowledge showed some associations with par-
ents’ variables. Parents with higher levels of education had
better knowledge of asthma, confirming previous research
[23,37]. Asthma is a complex disease, both in terms of its
aetiology and its treatment and a higher level of education
seems to facilitate the acquisition and integration of know-
ledge and an understanding of the fundamental processes
related to asthma. Nevertheless, parents’ asthma knowledge
was also associated with time since diagnosis. As expected,
parents whose children had asthma for a longer period of
time had better knowledge of asthma, indicating that experi-
ence and contact with the specialist may be an important
opportunity for learning.
We also found that parents’ asthma knowledge was
negatively related to psychopathological symptoms. This
association may have different justifications, but previous
research (see reference [10] for a review) found that parents’
psychological functioning is one of the family factors that
influence childhood asthma control. Evidence of the associ-
ation between poorer caregiver psychological functioning and
worse asthma outcomes for children was found in previous
studies [10]. A relationship between caregiver’s poor mental
health and non-adherence to asthma medication may play
a role in this association [31,49], but this was not evaluated
in this study.
Overall, parents’ level of asthma knowledge was not
related to the child’s asthma outcomes (frequency of symp-
toms in the last month, number of asthma exacerbations and
number of missed school days), which is in agreement with
previous findings [50]. Repeated evidence from different
diseases has shown that knowledge is not directly related to
disease management behaviour [51].
The second major objective of this study was to explore the
association between parents’ asthma knowledge and parental
measures of asthma severity. Contrary to our hypothesis,
results demonstrated that asthma knowledge has no signifi-
cant association with the subjective evaluation of asthma
severity by parents. However, parents who evaluated asthma
as not at all serious revealed a lower AKQ mean score.
On the other hand, parents’ asthma knowledge was also not
significantly associated with the report of asthma symptoms,
although parents with poor knowledge reported fewer symp-
toms. In addition, asthma knowledge proved to be related
to the number of nocturnal symptoms reported by parents
in SCA.
DOI: 10.3109/02770903.2013.822082 Asthma knowledge, severity and symptom perception 1007
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Knowledge seems important to recognize and report
asthma symptoms, especially nocturnal symptoms, which
are an indicator that asthma is uncontrolled. Nevertheless,
parents failed to identify these symptoms as an indicator that
asthma was not controlled, which probably lead to the absence
of further steps to adapt the medication and achieve better
control [11].
Considering that parents are the main informants about
their child’s symptoms, this inadequate symptoms report
may lead, indirectly, to the limitation of children’s activities,
the need for more medications, more exacerbations and even
more emergency department visits. Accurate information
to assess asthma control is crucial for physicians to be able to
monitor the child’s health status and to review the treatment
plan when needed. Furthermore, if parents devalue asthma
symptoms they will not take the necessary steps to manage
asthma appropriately.
Limitations
Although this study represents an innovative attempt to
understand how parents assess their child’s asthma severity
and contributes to an understanding of the role of asthma
knowledge in that assessment, some limitations should be
noted.
Firstly, we should point out the small sample size, even
though these parents did represent a diverse group in terms
of education level and were followed in two different
outpatient services. Also, this study did not include an
objective measure, such as pulmonary function or peak flow,
although we include a measure of clinical control by the
child’s physician. Further studies with the inclusion of a
larger sample and at least one objective measure of pulmon-
ary function may help to clarify some of our results.
In addition, a larger sample will allow for a further study of
the relationship between parents’ emotional disturbance and
the inaccurate reporting of children’s symptoms.
Clinical implications
Our results revealed that Portuguese parents tend to overesti-
mate their child’s level of control of asthma symptoms and
shown many limitations in their knowledge of the disease.
AKQs can be used to identify deficits in asthma knowledge
which may indicate the need for an asthma education
programme and a more careful communication to the
caregiver, with emphasis on a didactic approach.
Parents’ characteristics, such as level of education and
psychological disturbance, as well as time since diagnosis,
were associated with asthma knowledge. Parents’ level of
asthma knowledge was not related to the child’s asthma
outcomes or to their subjective evaluation of asthma severity
or symptoms reports. Nevertheless, parents with poorer
knowledge reported fewer symptoms and underestimated
asthma severity.
Although good knowledge does not ensure good asthma
management, our findings suggest that poor knowledge may
be associated with the perception of asthma as less severe and
with poor reporting of asthma symptoms, which will probably
affect parent–provider communication and make it difficult
to achieve paediatric asthma control. Health professionals
should be aware that asking general questions about asthma
severity is different from asking specific questions about
asthma symptoms, and that the reporting of symptoms is
influenced by parents’ knowledge. Children with ‘‘uncon-
trolled’’ asthma which are perceived as well controlled
by parents may be at risk for elevated asthma morbidity.
The evidence that underestimation of asthma symptoms
is associated with higher asthma morbidity strengthens
the importance of helping parents to recognize early symp-
toms [12,13].
Clinicians should be aware of parents’ asthma knowledge
deficits, underreporting of symptoms and underestimation of
asthma severity, all of which may affect parent–provider
communication and impede asthma control. The most recent
guidelines on asthma management [36] recommend the
development of a partnership between parents and the
health care professional to guarantee an effective management
of asthma, including asthma education, discussion of the
treatment goals and the development of a personalized asthma
action plan, as well as the periodical review of the level of
asthma control. We emphasize the role of parent–provider
communication in the promotion of that collaborative
relationship, where professionals should help parents to
recognize the real severity of asthma which is essential to
improve adherence to the treatment plan and attain good
asthma management. Increasing patients and physicians’
expectations of what can be achieved in terms of asthma
control might ultimately lead to improved care [6].
Declaration of interest
This research was partly supported by a grant from the
Portuguese Foundation for Science and Technology (SFRH/
BD/44757/2008) to C.M.S.
The authors report no conflicts of interest. The authors
alone are responsible for the content and writing of this
article.
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