How do parents of wheezing children report their symptoms? A single centre cross-sectional observational study

Abstract

Background:

Reported wheeze is of major relevance in the diagnosis and management of asthma and epidemiological studies on asthma prevalence. Our aim was to investigate the understanding of this term by parents and how they reported it to clinicians.

Methods:

A single-centre cross-sectional observational study was carried out at a tertiary care hospital. Parents of wheezing children self-completed a written questionnaire, which was analysed to understand parental understanding of the term wheeze and the main symptoms noticed by them. Their responses were compared to the operational definition used in the ISAAC study.

Results:

Questionnaires from 101 parents were analysed, out of which 50 children had an audible wheeze and 51 had an auscultatory wheeze. In our study, when asked about the main thing they noticed, 90 parents (89%) used non-auditory cues to identify wheeze, with the main presenting complaint being cough (n = 43, 42.6%), and only 4 (4%) reported wheezing. Even among the audible wheezers, only 7 (14%) used an auditory cue (alone or with some other cue) to describe their child's symptoms. Forty-seven parents knew the term wheeze, of which 19 parents (18.8%, N = 101) localised it to the chest, matching the epidemiological definition used in the ISAAC study.

Conclusion:

The word wheeze was not commonly used to describe a child's symptoms in our setting, even when the child was actively wheezing. Parents often use colloquial equivalents, nonspecific terms and other clinical cues such as coughing while reporting their child's symptoms. The parental concept of “wheezing” is different from epidemiological definitions.

INTRODUCTION

A child with an acute exacerbation of a wheezing disorder will have an acoustic (wheezing) and visual component (breathing difficulty, fast breathing, use of accessory muscles) at the time of presentation. Both of these components can be considered either a symptom (when reported on history by a parent) or a sign (when confirmed on physical examination by a clinician); hence, their correct identification is of major clinical relevance.

In a multilingual and multicultural country such as ours, parents may use different terms to describe respiratory sounds. For clinicians, an accurate history is essential to making the right diagnosis and providing the best treatment. There are shortcomings to the usage of medical jargon when conversing with parents, yet sometimes it is unavoidable. Wheezing is probably the most widely used acoustical term in respiratory medicine.[1]

Evidence suggests that parents and health care professionals differ in their perceptions of “wheezing”.[2] Some parents confuse “wheezing” with other respiratory sounds, while others perceive it as something other than a sound.[3]

Reported wheezing is the cornerstone to both diagnosis and management of asthma as per the Global Initiative for Asthma guidelines[4] physicians heavily rely on accurate parental reporting of the same, which in turn depends on parental understanding of the acoustics of wheezing.

Besides being used as a clinical diagnostic clue, parental reporting of wheezing is also used as a proxy marker to study asthma prevalence trends in epidemiological studies.

The core questionnaire used in the ISAAC[5] study used the following question to determine the prevalence of asthma – “Has this child ever had wheezing or whistling in the chest at any time in the past?”, along with other questions that determined how these wheezing episodes caused functional impairment in the child to assess asthma severity.

It is now accepted that there are cultural variations in the use of the term ‘wheeze’. As many cultures and languages do not have an equivalent word for wheeze[4,6,7] parents across culturally different settings might use some other colloquial equivalent to describe it. There is a possibility that they might even use some other non-specific description for wheeze, such as ‘noisy breathing’.

It is also possible that parents might focus on some other aspect (cough or visual cues) while reporting their child's symptoms, as the auditory component is not perceived by parents.

We studied how parents of wheezing children report their symptoms to health care providers and also analysed the parent's concept of wheezing.

MATERIALS AND METHODS

Study site: emergency department and paediatric outpatients of a tertiary care teaching hospital.

Inclusion criteria: patients between 6 months and 18 years of age who have made an unscheduled and emergency visit to the hospital for their respiratory symptoms and who were diagnosed to have wheeze (auscultatory or auditory) by two physicians.

Exclusion criteria: children not accompanied by their parents.

The participants self-completed a 13-item questionnaire, which contained 13 open-ended questions [Annexure 1].

In this questionnaire, we asked the parents what they noticed mainly when the child had a wheezing exacerbation and grouped their responses into four categories: auditory cues, visual cues, cough as a cue and mixed cues.

We also asked whether they knew the term wheeze and what they understood by that.

We grouped their responses as “sound”, “sound with other cue (s)”, “cough”, “cough with other cue (s)” and “difficulty in breathing and/or unwell” (non-sound). This grouping was done to allow a comparison of parents' responses with definitions in the epidemiology questionnaires, which are based on sound.

In our study, we matched parents' responses to the operational definition used in the ISAAC study – “Has this child ever had wheezing or whistling in the chest at any time in the past?”

Informed consent and institutional ethical committee approvals were obtained. The questionnaire was analysed.

Statistics-statistical software used

IBM SPSS Version 21.0 and Microsoft Office Excel 2007 Statistical Tests: Continuous data has been expressed as the median (interquartile range). The categorical data are summarised as frequencies and percentages. The normality of the continuous data was tested by the Shapiro-Wilk test. The continuous variables have been analysed by the Mann–Whitney U test and the Kruskal–Walis test. Post-hoc Dunn's test is used to do pairwise comparisons. Categorical data are analysed using Fisher's Exact test. Multivariate analysis is done by binomial logistic regression. P values <0.05 are accepted as indicative of statistical significance.

RESULTS

We approached 120 parents, with response rates of 80%, and a total of 101 children were recruited; 50 of these (49.5%) had audible wheeze, while 51 children (50.5%) had wheeze on auscultation on presentation. Both clinical findings were confirmed by two physicians.

Parent and child characteristics are presented in Tables 1 and 2- Most respondents were mothers (74.3%) and had no other children with wheeze or asthma (74.3%) and did not consider themselves wheezy (86.1%), had graduate degrees (77.4%) and had a first language other than English (94%). There was a history of asthma in the family for 32 (31.7%) of the children.

Table 1.

Characteristics of the children

Characteristics	Frequency	Percentage
Age
<1 year	10	9.9
1–5 years	48	47.5
6–10 years	34	33.7
>10 years	9	8.9
Gender
Male	59	58.4
Female	42	41.6
Diagnosis (<6 years age group) n=58
Wheezing associated with fever	19	32.7
Wheezing without fever	39	67.2
Wheezing without fever and recurrent	18	31
Diagnosis (>6 years age group) n=43
Diagnosed as asthma	12	27.9
History of wheezing in family	26	25.7
Family history of asthma	32	31.6

Table 2.

Characteristics of the parent

Characteristics	Frequency	Percentage
Relation
Mother	75	74.3
Father	26	25.7
Educational qualification
<12 years of formal education	23	22.7
>12 years of formal education	78	77.2
First language
Non-English speaking	95	94.1
English speaking	6	5.9
History of wheezing/asthma
Yes	14	13.9
No	87	86.1

Children were aged between 6 months and 14 years. There were 43 children above the age of 6 years, out of whom 12 were diagnosed with asthma based on their symptoms and reversibility on lung function tests. The remaining 31 had probable asthma. There were 58 children under the age of 6. Out of them, 19 had wheeze associated with fever (infection-triggered wheeze), while 18 children had wheeze without fever, which was recurrent and classified as probable asthma. There were no cases of fixed airway obstruction. A total of 84.2% of children started wheezing before 5 years of age.

On being asked the main symptom noticed by the parents [Table 3], the main presenting complaint was cough (n = 43, 42.6%) followed by difficulty in breathing (n = 28, 27.7%). Only four (4%) reported wheezing. Two (2%) noticed the child being unwell but could not further specify, and 1 (1%) noticed noisy breathing. Twenty-three parents (22.9%) noticed more than one complaint to identify that the child was sick.

Table 3.

Parental history during presentation of a child with an acute episode of wheeze

Main thing noticed by the parents	Physician detected an auditory wheeze	Physician detectan ed auscultatory wheeze
Cough (cough as cue)	20	23
Wheezing (auditory cue)	4	0
Difficulty breathing (visual cue)	14	14
Unwell (visual cue)	1	1
Noisy breathing (auditory cue)	0	1
More than 1 complaint	11	12

Even in the subgroup of patients who had an audible wheeze, only 7 (14%) used an auditory cue (alone or with some other cue) to describe their child's symptoms. The number of parents who used cough, visual cues and more than one cue was similar in both subgroups of children with auditory and auscultatory wheeze.

We studied the association between parental characteristics and the pattern of symptom reporting [Table 4]. Parents who had a history of wheezing themselves were more likely to identify wheezing in their child through auditory cues (P value -0.047). The symptom of coughing was the commonest cue across all age groups except between 1 and 5 years of age, where visual cues were most commonly used (P value 0.038).

Table 4.

Association between parental characteristics and pattern of symptom reporting

Parents demography	Auditory cue	Visual cue	Cough	More than 1 cue	P
Education
<12th standard	2	8	11	2	0.79
>12th standard	10	22	32	14
Language
English	1	1	3	1	0.873
Non-English	11	29	40	15
Wheezing in parents
Yes	4	3	3	4	0.047*
No	8	27	40	12
Wheezing in siblings
Yes	4	2	15	5	0.023*
No	8	11	28	28
Child's age
<1 years	1	0	8	1	0.038*
1–5 years	5	21	17	5
6–10 years	4	7	16	7
>10 years	2	2	2	2

We studied the inter-observer agreement between the parent and physician who detected wheeze, which showed slight agreement with a kappa coefficient of 0.12. [Table 5].

Table 5.

Sound descriptors used by parents to describe sound while breathing

	Audible wheeze	Auscultatory wheeze	Total	P
Sound heard
Yes	49	24	73	0.00000001
No	1	27	28
Sound description* (n=73)
Whistle/wheeze related (wheeze/whistle/music related)	15	9	24	0.00000002
Transmitted sound-related (congestion/ghar-ghar)	22	6	28
Snoring related (snoring)	1	2	3
Dyspnoea-related (heavy breathing/difficulty in breathing/panting/fast breathing	8	3	11
Cough	3	4	7
Vibrations	0	1	1

*Response to the question: “What did u hear? Describe the sound heard”

On direct questioning of whether any sound was heard while the child was breathing at the time of examination, 73 parents (72.3%) said they could hear a sound, out of which 49 children had an audible wheeze and 24 children had a wheeze on auscultation (P value 0.00000001).

We wanted to study the synonyms used by parents to describe the term wheeze [Table 5]. Amongst children who had an audible wheeze, 22 parents (44%) used sound-related synonyms, with “Ghar-Ghar” being the most commonly used synonym; 15 parents (30%) used wheezing or wheezing-related synonyms (e.g. whistling); 1 parent (2%) used the term snoring; 8 parents (16%) used dyspnoea-related synonyms like ‘panting/heavy breathing’; and 3 parents (6%) used the term ‘cough’ to describe the wheezing sound. Only 30 parents (60%) (P value 0.00000009) localised the sound to the chest; 9 parents (18%) localised it to the mouth; 4 parents (8%) to the throat; 3 parents (6%) to the nose; and 3 parents (6%) to both the nose and mouth.

Amongst the audible wheezers, 15 parents (30%) were able to correctly label wheezing, while 9 parents (17.6%) of auscultatory wheezers termed the non-wheezing sound as wheezing.

In our study, we have taken wheezing to be a sound with a whistling quality as per the ISAAC definition. The sensitivity and specificity of parent-detected wheeze were 30% and 82.3%, respectively compared to physician-diagnosed wheeze, while the positive predicted value was 62.5% and the negative predicted value was 54.5% [Table 6].

Table 6.

Inter-observer agreement between parents and physician detected wheeze

Physician-diagnosed wheeze	Parent detected wheeze Yes	Parent detected wheeze No	Total
Audible wheeze	15	35	50
Auscultatory wheeze	9	42	51
Total	24	77	101

We tried to capture the qualitative aspects of wheezing by breaking it down into what parents understood by the term, the quality of the sound heard, and the localization of the sound. These components were picked up from the core questionnaire used in the ISAAC study, which used the following question to determine the prevalence of asthma: “Has this child ever had wheezing or whistling in the chest at any time in the past?”.

On asking the parents whether they knew the term wheeze, 47 (46.5%) responded positively. Of these, 19 parents (18.8%, N = 101) localised it to the chest, matching the epidemiological definition used in the ISAAC study [Table 7].

Table 7.

Parental understanding of the term wheeze

Characteristic	Frequency	Percentage
Know the term “wheeze”
Yes	47	46.5
No	54	53.5
Idea of wheeze
Sound only	27	26.7
Sound with difficulty breathing and/or cough	8	7.9
Cough alone	4	4
Cough with difficulty breathing	2	2
Difficulty breathing alone	6	5.9
NA	54	53.5
Identified it as a sound coming from the chest
Yes	19	18.8
No	28	27.7
NA	54	53.5
Described as whistle-like
Yes	15	15
No	31	31
NA	54	54

Amongst those who knew the term wheeze (n = 47), 27 of the parents (57%) defined wheeze as a “sound”. Fifteen (31%) mentioned “whistling”, 8 (17%) thought of it as a sound with other cues, 12 (25%) of the parents defined it as a non-sound-based cue, (4 parents (8%) thought of it as ‘cough’, 2 parents (4%) thought of it as ‘cough with difficulty in breathing’ and 6 parents (12%) thought of it as difficulty in breathing.

We studied the association between correctly identifying wheeze as a sound emanating from the chest per the epidemiological definition and parent-child characteristics. Children who were diagnosed with asthma (P value 0.009), had a family history of asthma (P value 0.006), and with older parents (P value 0.009) were more likely to have parents who correctly defined wheezing as per the epidemiological definition. We didn't find any association between parental education and the correct identification of wheeze. This has been reported in the literature before.[8]

Parents with children with an age of onset of wheeze between 5 and 10 years were associated with correctly labelling wheeze, which was statistically significant (P value 0.001). We found that parents who had a history of wheezing or asthma themselves (0.019) and whose children were diagnosed with asthma (P value 0.025) were more likely to correctly label wheezing in their child.

DISCUSSION

As the description of wheezing by parents by recall is often unreliable, we wanted to study parents of children who were actively wheezing at the time of the study.

In our study, the majority of the patients were either not familiar with the term “wheeze” (53%), or had a conceptual misunderstanding of the term (only 20.8% agreed to wheeze being a sound). These findings highlight the possible limitation of using wheeze as a clinical clue in the diagnosis of asthma. This finding would also mean that there would be limitations to use the term “wheeze” in asthma questionnaires to study asthma prevalence.

On a literature search, correct identification of the term wheeze was reported to vary from high (83.5% correctly identifying the term wheeze) when the definition of wheeze was given to parents before the survey[9] to moderate (66%) when the term prevalent in the local language was used[8] to low when the study methodology was similar to our study.[10]

“Whistling sound”, is used as an alternative in many epidemiological studies, including the ISAAC study, to describe wheeze. This word was used by only 11(%) parents in our study.

Amongst the 12 children in our study who were diagnosed with asthma, only 6 parents (50%) correctly defined wheezing”, which highlights the need for better parent education.

In our study, when asked about the main thing they noticed, 90 parents (89%) used non-auditory cues to identify wheeze. Even in the group of audible wheezers, the acoustical component of exacerbation did not receive much attention. While it is understandable that parents would use non-auditory cues to identify wheezing when it is present only on auscultation, in our study, even parents of audible wheezers used non-auditory cues to identify that their child was wheezing. This finding supports the variability in assessing this symptom and highlights the difficulty in capturing the concept of “wheezing” with a single definition. The relevance of these cues and their validity should be considered when assessing wheezing and making a diagnosis of asthma.

Amongst the audible wheezers, 15 parents (30%) were able to correctly label wheezing, while 9 parents (17.6%) of auscultatory wheezers labelled the non-wheezing sound as wheezing.

Our study had similar findings to the study carried out by Shalini Shanmugam et al.[10] in Kuala Lumpur, Malaysia (a predominantly non-English-speaking country). In their study, 38.5% of parents correctly labelled wheeze, while 16.5% used wheeze to describe other sounds.

In two studies carried out in the UK, a higher percentage of parents used the term wheeze, however, more often than not, non-wheezing sounds were also labelled as wheeze.[3,10] In a study conducted by RS Cane et al.,[11] 59% of parents correctly labelled wheeze, 30% called wheeze by another name and 30% called other sounds as wheeze.

In a study carried out in Sheffield, UK, by HE Elphick et al.,[3] an interview was carried out with the parents of 92 infants with noisy breathing, beginning with an open question asking the parents to label the noise their child was making. Finally, the parents were asked to choose from a wheeze, ruttle and stridor based on imitation by the investigator and video clips of children. Wheeze was the most commonly chosen word on initial questioning (59%). Only 36% were still using this term at the end of the interview, possibly suggesting overuse of the term wheeze.

Hence, perhaps in populations where English is not the native language, there is underuse of the word wheeze and, as such, under-recognition of asthma and other wheezing disorders if doctors diagnose wheezing disorders based on parental reporting of wheezing. This finding also highlights the possible limitations of using written asthma questionnaires in countries where the native language is not English.

In our study, 60% of the patients were able to localise the wheezing sound to the chest. Our findings were similar to those of the study carried out by Shalini Shanmugam et al.,[10] where 60.5% were able to localise the wheezing sound they heard to the chest.

Similar results were obtained in a study carried out by RS Cane et al.[2] parents were better at locating wheeze (69%) than labelling it (59%). These findings indicate that parents were significantly better at locating the origin of the wheeze than labelling it, suggesting that clinicians should use the location of the sound to aid in identifying wheeze.

Our study has several limitations. Firstly, our study is an institution-based study, so its results cannot be generalised to the entire population. Secondly, our study group consisted of parents of wheezing children, and this might overestimate adequate knowledge of “wheezing” as compared to the general population. Thirdly, our results are based on clinical findings of wheezing at the time of presentation to the hospital and reflect only what is present at the time of examination and not what parents observed before they arrived.

CONCLUSION

In our setting, the word wheeze was not commonly used to describe a child's symptoms, even when the child was actively wheezing.

Parents often use colloquial equivalents, nonspecific terms like noisy breathing, and other clinical cues such as coughing or difficulty breathing while reporting their child's symptoms.

The parental concept of “wheezing” is different from epidemiological definitions. Clinicians should realise the limitation of using the word “wheeze” or “whistling sound” when eliciting a history from parents, as many parents use other words to describe wheeze.

Also, the interpretation of questionnaire studies in childhood wheezing disorders is hampered by variations in parents' understanding and interpretation of the term wheeze. Asking the origin or localisation of the sound may be more accurate than using the word wheeze. Parents in our study group did not overuse the word wheeze.

The use of culturally appropriate words for wheezing leads to better recognition of wheezing by parents as it circumvents linguistic barriers.

Sensitising parents with the clinical and epidemiological definitions of wheezing beforehand would increase the accuracy of clinical diagnosis and asthma prevalence studies, respectively.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

Annexure 1: STUDY PROFORMA

• Name:

• Age:

• Sex:

• Auscultatory or audible wheeze:

• Religion:

• Address:

• Number of siblings:

• Educational qualification of parent/guardian answering the questionnaire:

• Age of parent answering the questionnaire:

• First language:

• Mob no.

• MR no.

• Date of examination:

• Family history of asthma:

QUESTIONNAIRE

1. What are your main complaints?

2. Can you hear any sounds/noise while the child is breathing?

3. Describe the sound heard.

4. Have you ever heard the term wheeze? How do you define it?

5. How do you identify it, and what is your idea of wheeze/the current complaints the child is having? What is the main thing you notice when your child is wheezing/having a problem similar to the present complaint?

6. Where do you localise the sound heard?

7. At what age did your child have his/her first episode of wheezing/problem similar to the present complaint?

8. How old is your child now?

9. How are you related to the child?

10. Do you have a history of wheezing/complaints similar to the child, currently or in the past?

11. Does the child's sibling have a history of wheezing/similar complaints as the child's present problem?

12. What are the synonyms, of wheezing among other respiratory symptoms and sounds.

13. Was a diagnosis of asthma ever given by a doctor to your child?