Parent misperception of control in childhood/adolescent asthma: the Room to Breathe survey

RESULTS

Asthma symptoms

Parents were asked to describe how frequently their child experienced mild and serious asthma attacks; these data are presented in online table I (see online supplementary material). Parents reported that their children had mild asthma attacks at least weekly in >10% of cases; only one in six children had a mild asthma attack one or fewer times per year (online supplementary material; table I). Severe asthma attacks, requiring oral corticosteroids or hospitalisation, were reported at least once a year for 34.9% of children/adolescents. Frequent occurrence of such severe attacks (at least once a month) were much more common in South Africa (27.5% of children) than in other countries (mean 3.4%, p<0.0001) (online supplemetary material; table I). Parents were also asked to record nocturnal awakenings and use of reliever medication for their children (fig. 1). During the last 4 weeks, more than half of the children had awakened at night at least once due to their asthma and reliever medication had been used by two-thirds of children.

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Figure 1–

Parent-reported incidence of their child's nocturnal awakenings and use of reliever medication during the last 4 weeks.

DISCUSSION

The results of this international survey show that parents overestimate their children's asthma control. The majority of parents considered their child's asthma to be mild or intermittent; a very low proportion of parents actually used the term “severe”. However, the C-ACT showed that almost half of children/adolescents had scores of ≤19, suggesting inadequately controlled asthma. Asthma control as assessed GINA or BTS/SIGN guidelines was even worse (table 2). These results either indicate a reluctance of parents to concede that their child's asthma is inadequately controlled and that this situation requires action, or suggest that parents fail to recognise poor control because children's symptoms may be difficult to detect. However, the latter explanation is at odds with recent studies, which conclude that caregivers can make reliable assessments of asthma control even in preschool children [20]. The disparity between the level of asthma severity perceived by parents and the actual reported symptoms supports previously reported work in this field [11, 13, 21]. These data, taken in conjunction with previous reports, suggest that parents seem to maintain a belief that even mild asthma will remain symptomatic despite treatment with ICS, placing an important obstacle in the path of guideline-defined control for children [22, 23].

Our recruitment strategies were designed to minimise possible bias introduced by source of recruitment. For instance, recruitment from hospital clinics might have tended to increase the severity of asthma reported. Random dialling was believed to give us the highest likelihood of identifying families with children whose experiences of asthma were typical of the general population. Due to legal considerations in South Africa, a telephone-based recruitment strategy was impossible. This, along with different economic conditions and access to healthcare between the countries, may have led to the inclusion of more severely affected children in the South African cohort (online supplementary material; tables I and II). Another explanation for the difference in asthma control between South African children and those in other countries may be the limited access to healthcare and underinsurance issues in the former country. Studies in inner-city African-American children in the USA who also suffer from limited health insurance and access to healthcare confirm that asthma control in such subjects is poor [24–27]. The sex distribution and self-assessed asthma severity of the children in this study was comparable with that of previous studies, such as AIRE [16].

The lack of asthma control in children and adolescents has been highlighted previously [5, 9]. Poorly controlled asthma represents a heavy socioeconomic burden on society [28, 29]. Poor adherence to treatment guidelines in young people with asthma has been related to their parents lacking sufficient knowledge about the illness and is also influenced by parental beliefs (poor expectations) and concerns about treatment [30–32]. GINA guidelines indicate that asthma self-management education is imperative for providing patients with the skills required to control asthma and improve outcomes in their children [18] and other studies have also highlighted the need for a good educational programme [33–36]. It is unlikely that the poor level of asthma control in most participants in this survey was due to physician under-treatment, because those with the most poorly controlled asthma were most likely to report receiving a combination of different asthma controller medications. However, we cannot exclude poor inhaler technique, poor adherence or “corticosteroidphobia” as a cause for persistent poor control. Indeed, when we asked parents of children receiving ICS, those who self-reported “concerns about steroid medication” were more likely to have a child with very poor control (three or more GINA-uncontrolled items) (OR 1.65 (95% CI 1.23–2.23); p=0.0006). This would suggest that steroid phobia may be an important contributor to control and is consistent with recent qualitative research [22].

Although the concept of asthma control has become a key issue in international asthma guidelines, there is no consensus on how to assess it [8]. The results of this study show that different methods to assess asthma control (C-ACT, BTS/SIGN and GINA) yield different levels of asthma control. Guideline-defined asthma control was found to be less common than well-controlled asthma using the C-ACT. Using the C-ACT may therefore underestimate asthma control in real life. Clinicians should also be aware that simply asking parents or children to assess the current state of their asthma is likely to yield an overly optimistic picture of asthma control. We, therefore, encourage clinicians caring for children with asthma to carefully check in each follow-up visit whether GINA-controlled items have been truly attained, and to interview parents on the limitations they impose on their child's activities because of their asthma.

We acknowledge several important limitations of the Room to Breathe survey. The large scale of the survey and the use of telephone interviews in most countries meant it was not possible to apply objective measures, such as lung function. C-ACT has only been validated in children aged 4–11 yrs and with face-to-face interviews. The authors acknowledge that telephone responses may not be identical to those received during face-to-face interview. Whilst scores of ≤19 indicate inadequately controlled asthma, the sensitivity and specificity of C-ACT are considerably less than 100% (sensitivity 74% and specificity 68%) [17]. This will, of course, lead to both under- and overestimation of control, as sensitivity and specificity are <100%. We therefore chose to present data for an intermediate area of C-ACT score (20–21) as a separate value. This division of the C-ACT score was not undertaken by its authors [17]. Moreover, we have applied it to children ≤15 yrs of age. Nonetheless, there is a degree of face validity for these approaches, as there is a strong inverse correlation between C-ACT scores and other measures of control (GINA and SIGN/BTS; p<0.001) and, despite the size of the sample, C-ACT does not significantly differ by age grouping (p=0.197). In our cohort, children with C-ACT scores of ≥22 had a mean±sd of 1.10±0.89 GINA-uncontrolled items, children with C-ACT scores of 20–21 had 2.04±0.89 GINA-uncontrolled items and those with C-ACT scores of ≤19 had a mean of 3.12±1.05 GINA-uncontrolled items.

In our analyses, no weighting was given to the individual components of GINA or SIGN/BTS control. Thus, a child who had used a reliever more than twice per week (>10 out of 28 days) would be considered as uncontrolled as a child who used their reliever many times a day. Moreover, the receipt of an oral steroid burst is highly dependent upon a number of physician-, parent- and child-related factors, which might not indicate overall control. Future studies including lung function measurements would be especially helpful in clarifying the relationships between individual control items. Remote measurement of lung function measurement may greatly assist this type of data collection.

The strengths of the Room to Breathe study include the large sample size, having yielded >1,000 responses from parents regarding their child's asthma and the international setting. Furthermore, we believe the relative anonymity offered by telephone interviews is likely to result in honest responses to questions.

Asthma control guidelines have changed considerably since the AIRE study was published [16]; the modern goal of asthma therapy is to achieve asthma control by reducing current impairment and future risk. Although there are numerous effective treatment options available, the data collected in this study indicate that current paediatric/adolescent asthma management remains suboptimal. The study has also highlighted that parents are relatively poor discriminators of their child's asthma severity, tending to underestimate severity, and providing a major barrier to maintenance of adequate treatment. It is, therefore, important for healthcare professionals to ensure not only that adequate education is delivered to the primary caregivers of children/adolescents with asthma [37], but also that the child remains central to any discussions regarding control in the clinic.