Paediatric Respiratory Reviews 14 (2013) 229–231

Clinical Usefulness

Limitations of asthma control questionnaires in the management andfollow up of childhood asthma

Will Carroll

Honorary Associate Clinical Professor, University of Nottingham, Derbyshire Children’s Hospital, Derby, UK

EDUCATIONAL AIMS:

The reader will be able to appreciate:

� The limitations of questionnaires in terms of correlation with clinically relevant patient outcomes.� That commonly used asthma questionnaires are insensitive measures of asthma control when compared with GINA guidelines.� That questionnaire-based assessment gives different information than that offered in the direct interview setting.

A R T I C L E I N F O

Keywords:

Asthma control questionnaires

symptoms

children

treatment

follow-up

S U M M A R Y

It is important to achieve asthma control whenever possible in clinical practice. Asthma control

questionnaires undoubtedly provide a useful measure of asthma control in research studies but their

place in routine clinical practice has yet to be secured. There is considerable variation in the results

yielded from different validated asthma control tools. It remains to be seen whether they improve the

reliability of reporting of symptoms to health care professionals when compared to verbal reporting.

In the presence of sensible care from compassionate and well informed doctors and nurses asthma

control questionnaires will not improve outcomes for children. A patient-focused clinical encounter

supplemented with lung function measurements and occasional eNO testing has more to offer families

and children than control questionnaires and their routine use in the clinic cannot be recommended on

the basis of current evidence.

� 2013 Elsevier Ltd. All rights reserved.

Contents lists available at SciVerse ScienceDirect

Paediatric Respiratory Reviews

ONE MAN’S MEAT IS ANOTHER MAN’S POISON

‘So John, tell me how have you found exercise over the lastcouple of months?’

John looks carefully at his shoes, and then towards his mother’sexpectant face before committing to an answer. After a pause hesays, ‘Oh it’s been fine.’

Of course all practising paediatricians recognize this scenario. Itis easy to see how asthma control questionnaires might reassure usthat all is well when even a short but careful discussion with thechild or parents will reveal an undisclosed underlying problem.The art of medicine relies upon not simply knowing what to ask,but how to ask it. It also teaches us how to hear what is being saidby listening to the way that it is said.

Any set of closed questions will only identify those symptomsor concerns which are deemed to be important by the question set

E-mail address: will.carroll@nhs.net.

1526-0542/$ – see front matter � 2013 Elsevier Ltd. All rights reserved.

http://dx.doi.org/10.1016/j.prrv.2013.06.007

which has been pre-defined from population studies. Reliance onthe closed questions within a questionnaire significantly increasesthe risk that those elements of asthma control most important tothe child or family are overlooked.

INTRODUCTION

In recent years there has been a recognition that asthmatreatment in childhood should aim to provide control and stabilityfor the individual patient. Guidelines for asthma management haveevolved considerably during the last decade, from treatmentrecommendations based on the level of asthma severity to thecurrent emphasis on achieving full asthma control.1,2

Asthma control is defined as the extent to which the variousmanifestations of asthma are reduced or removed by treatment.3

Poor assessment of asthma control results in suboptimal treat-ment; cohort studies have shown that optimal control is likely toreduce the future adverse consequences of asthma, includingexacerbations or hospital use.4–6 It follows that reliable assessment

W. Carroll / Paediatric Respiratory Reviews 14 (2013) 229–231230

of asthma control in children/adolescents is important to enableeffective care via the tailoring of therapy to improve outcomes.7

Despite widespread availability of effective therapies andupdated guidelines for clinicians asthma control in the childhoodpopulation still falls short of guideline standards;8 this may be dueto overestimation of asthma control by both physicians andparents coupled with low expectations of achievable control.9

This recognition that poor control is associated with subsequentpoor health outcomes has resulted in an explosion of question-naires designed to determine whether asthma during childhood iscontrolled or not.10–15 A small industry has emerged withinacademic paediatrics in the production and validation of differentquestionnaires for use in research studies. However, the role ofthese questionnaires in routine clinical practice is less wellestablished. The assumption that routine use of asthma controlquestionnaires will lead to better outcomes for children and theirfamilies has not yet been adequately demonstrated. This articlewill examine the validity of this assumption and review the dataavailable from more recent ‘real-world’ studies.

IDENTIFYING THE GAPS IN ASTHMA CONTROL

The most striking thing about population-based studies ofasthma control is their consistency in reporting poor control asdefined by asthma guidelines. Despite this, our experiences asclinicians and researchers would suggest that many of the childrenin our care are able to achieve and maintain good asthma control.There is a gap between our reasonable expectations of good controlfor the majority of children with asthma and the actual healthstatus of children. The reasons for this gap are incompletelyunderstood. Optimal care requires that we identify those timeswhere the gap exists. Asthma control questionnaires will onlysolve the problem if the gap only exists because clinicians andparents are unaware of what constitutes good control.

There is no perfect definition of what constitutes control inchildren with asthma. However, there is broad agreement thatasthma is uncontrolled if there are persisting symptoms at night,frequent symptoms during the day or if the child needs to seek outunscheduled treatments or medical reviews. Most guidelines alsostipulate that lung function should be normal.

QUESTIONNAIRE VERSUS INTERVIEW – WHAT DO THE STUDIESTELL US?

There are relatively few recent studies which assess the validityof self-report of any disease. Self-report of medical history isnotoriously unreliable, even in well-educated and motivatedpopulations. A study of 7841 adult participants of the EPIC-Potsdamstudy demonstrated significant under-reporting of asthma and hayfever by participants in questionnaires. Of the 333 respondents withasthma 191 (57.4%) reported this in both questionnaire andinterview, 26 reported asthma in the questionnaire alone (7.8%)but 116 (34.8%) mentioned this in interview alone.16 More recentlythe value of self-report of asthma has been examined in Finnishpublic-sector workers. Whilst self-reports of asthma appear to bespecific (91%) they are much less sensitive (63%).17 Both papersconclude that self-report questionnaires are unreliable.

In childhood asthma this unreliability is likely to becompounded by parental misunderstanding of the various termsdoctors use to describe asthma symptoms. Young et al drewattention to the complexity of reporting of respiratory symptomsin children and the importance of contextual factors in parents’judgments.18 This qualitative study was preceded by threeimportant quantitative studies in the UK which demonstratedthat parents’ concepts of wheeze differed significantly from thoseused in epidemiological surveys19 and that parents use the term

‘wheeze’ to describe a range of respiratory noises, only some ofwhich conform to a clinical definition of wheeze.20,21

MEASURING ASTHMA CONTROL – WHY DO THEQUESTIONNAIRES DISAGREE?

It is unsurprising therefore that different measures of controlgive different answers to a simple question – is a child’s asthmacontrolled? Several authors have recently highlighted the incon-sistencies yielded by different asthma control measures whenapplied to children.8,22,23

Koolen et al demonstrated that both the Children’s AsthmaControl Test (C-ACT) and Asthma Control Test (ACT) wereinsensitive measures of asthma control when compared to GINAcriteria. Using the pre-specified cut-off point of �19 for C-ACT andACT resulted in a sensitivity of 66% for ACT and only 33% for C-ACT.22 Remarkably similar results were seen in the Room toBreathe survey.8 In this study, only 14.7% of the childhoodpopulation achieved GINA-defined complete control. Using therecommended C-ACT score of �19 was a much less stringentmeasure of control and it resulted in a sensitivity of 39%. Controlwas more commonly reported in a study of Turkish children withasthma seen in the paediatric outpatient clinic.22 In this study justover half of the children reported good GINA-defined control.Nonetheless, there was significant inconsistency seen betweenGINA and C-ACT measures of control with 84/314 (26.7%) childrenbeing discordant for ‘control’. This disagreement between differentasthma control questionnaires suggests that even if use of aquestionnaire was clinically justifiable, it would be impossible tochoose the tool to use and each might give different answers.

TRUTH-TELLING AND ‘REVERSE PLACEBO’

One of my main reservations about the use of asthma controlquestionnaires relates to my observation that parents of children,or children themselves might not want to freely admit the genuineextent of their symptoms. It is easier to conceal the truth from apiece of paper than an empathic interviewer – and if a questionnaireis used in anticipation of a review, then a child (or parent) will becaught within the lie. There is good evidence from childrenwith asthma to indicate that both children and parents are morelikely to lie to either a computer or written questionnaire thanan interviewer.24 Bender et al carefully evaluated the impact ofinterview methods on accuracy of child and parent reports ofadherence with asthma controller medication. Unsurprisinglythey found that both children and parents greatly over reportedadherence. The greatest discrepancies between self-report andobjectively measured adherence were seen in the computer-interview conditions and the smallest were seen when childrenwere interviewed face-to-face within the previous 24 hours. Evenin these optimal circumstances reported adherence was onlywithin the �25% accuracy range for half of the participants.

In reporting asthma control it is likely that a number of complexfactors will reduce the accuracy of parent and child reporting. Thefirst is a persistent belief that acknowledging poor control will leadto an increase in preventer medications; which parents or childrendo not want to use. In a structured review of patient surveys itemerged that 70% of parents of asthmatic children were concernedabout the effects of inhaled corticosteroids (ICS).25 Unpublisheddata from the Room to Breathe study8 shows that 27% of parentswhose children were prescribed ICS remained ‘very worried’ abouttheir effects and 32% were ‘quite worried’. In contrast only 11%were ‘not at all concerned’ about possible adverse effects of ICS ontheir children. In some circumstances children might minimizesymptoms in an attempt to please either their parents or theirdoctor – a ‘reverse placebo’ effect. Neither of these factors can be

W. Carroll / Paediatric Respiratory Reviews 14 (2013) 229–231 231

reduced or eliminated without first acknowledging these realitieswith families and susbsequent careful open discussion.

RAISING EXPECTATIONS – PHYSICIANS OR PATIENTS?

Perhaps the most notable success of asthma control ques-tionnaires to date has been the apparent effectiveness of theChildhood Asthma Control Test in raising parent and physicianexpectations for disease control.26 However, this effect can beachieved just as effectively by simply asking our patients todemand more of us as their doctors and nurses in clinic.

The biggest danger to overall care is that questionnaires replacea more holistic review of patient status. In reality each measurablecomponent of asthma adds a little to the picture of overall statusbut these measures do not conveniently cluster together and arenot possible or necessary for all children. Thus exhaled nitric oxide(eNO) does not correlate well with lung function measurementsbut does show some agreement with reported symptoms in atopicchildren.27 Like asthma questionnaires FeNO measurement adds tothe evaluation of some children with asthma28 but is probably notroutinely useful or applicable to all children.29,30 Asthma ControlTest scores are also not helpful in determining exercise inducedbronchospasm (EIB). In a study of 81 asthmatic children, 36% ofthose with complete asthma control (ACT score of � 25) haddemonstrable EIB compared to 21% of those with partial control(ACT score of 21-24) and 28% of those with poor asthma control(ACT score of �20).31 Lung function measurements remain a vitalpart of routine care and changes in values can often provokehelpful discussions about adherence and control.

CONCLUSIONS

It is important to aspire for better asthma control for thepatients under our care. However, asthma questionnaires are notnecessary in routine clinical practice and certainly cannot replacethe important art of talking to our patients and listening carefullyto their concerns and experiences of illness. If they are used, it isimportant to acknowledge both their limitations and the dangersinherent in their use which includes the possibility that less, ratherthan more truthful information about the health status of childrenwill emerge from the subsequent consultation.

References

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