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Asthma is believed to be the most common chronic disease affecting children, yet the burden of the condition is often overlooked because deaths are more common from other respiratory conditions, such as pneumonia.1 Gaps in knowledge about recognizing and treating asthma are associated with nonadherence and lower disease control.2 Physicians can help bridge these disparities by educating patients, parents, and other stakeholders about the condition, particularly the importance of consistent treatment to control its symptoms.
Is Asthma Control Overestimated?
When children ages 5 to 12 years with mild or moderate asthma were asked their level of adherence with asthma control therapies, 94% self-reported adherence via daily diary cards2; however, objective measurement by counting the number of doses left in the same group’s inhalers revealed only 61% adherence.2
In a study comparing parents’ reports of adherence with dose counters, 42% of parents reported complete adherence whereas only 10% of their children actually had complete adherence according to the dose counter.2 Further, only 58% of the expected puffs were taken during the 30-day follow-up.2
In another study, parents of US preschoolers with asthma reported significantly higher adherence (92%) than pharmacy refill data showed (57%).2 Interestingly, physicians’ estimates of the adherence of their pediatric patients with asthma were generally lower than the level that parents reported (70% vs 85%).2
Attitudes and Concerns Regarding Asthma Medication Adherence
Although inhaled corticosteroids (ICSs) remain the top treatment for children with persistent asthma, in poorly controlled cases, leukotriene receptor agonists or long-acting β2 agonists may be added to the regimen2; however, researchers warn that before changing medication therapy, it is essential to first determine level of medication adherence.2
In fact, several studies have shown that adherence to ICSs ranges from 49% to 71%.2 Time does not improve results, as a 4-year study showed that mean adherence during the first year was 69% compared with 52% in the fourth year.2
Discontinuing medication early also is an issue.2 In the United States, more than half of children and adolescents assessed had no refill claims, and 63% had discontinued their asthma medications within 3 months of filling the first prescription.2 This trend was higher for ethnic minorities and disadvantaged households2; however, research shows that adherence is higher in children age <6 years, possibly because of increased parental guidance at that age.2 Further, older age was associated with poorer adherence to nonmedication aspects of asthma control guidelines.2
Caregivers frequently weigh their concerns about asthma treatment — their beliefs about the condition and its treatment, managing child resistance, preserving family relationships, and promoting a “normal life” for their family — against the benefits of treatment.2
Specifically, reasons for nonadherence reported by parents of asthmatic children between ages 18 months and 7 years include2:
- forgetting to give medication;
- child’s reaction to being given medication;
- fear of adverse effects;
- fear of addiction;
- fear of weight gain;
- expense of medication;
- issues with using inhaler devices; and
- need for higher doses.
For adolescents and their parents, additional reasons for lack of adherence include2:
- social pressures/embarrassment in front of peers;
- dislike of spacer device to take inhaled medication;
- lack of responsibility for medication administration;
- forgetfulness; and
- fear that using inhalers leads to drug dependence.
Adherence rates among adolescents are higher for patients classified as “accepting” than for patients classified as “ambivalent” or “skeptical.”2
Several studies report that parents of patients with asthma have adjusted ICS dosage because of concerns about adverse effects or medication resistance in general, although adolescents have reported they have reduced or skipped doses when they had fewer symptoms, did not believe they needed it, or did not have their inhalers with them.2 Parental beliefs about the necessity of medication to maintain their child’s health correlated with good medication adherence, and a higher risk for uncontrolled asthma was reported in children whose parents had concerns about medication.2
Opportunities for Education
Low knowledge about ICS has been linked to poor adherence, and low parental education level has been associated with uncontrolled asthma.2
Of the parents who knew that anti-inflammatory drugs should be taken every day, 84% reported they gave their child the medicines every day compared with only 25% of the parents who did not have this knowledge. 2 Many parents have an inadequate understanding of the differences between ICS and rescue medications, and >50% reported they would like more information about those differences. 2 Overall, 62% would like to know more about common triggers of asthma exacerbations. 2 Researchers suggest that physicians discuss strategies to address nonadherence issues with their parents to improve adherence.2
A focus group of patients with asthma and their parents in Sweden uncovered that parents would prefer getting repeated education in asthma care, even in instances such as having a second child diagnosed with the condition.2 A study found that the risk for nonadherence decreased for parents who said their primary care provider was a source of helpful information.2
Research reveals that multimedia education using text, sound, pictures, and video can increase parents’ level of knowledge and self-efficacy.2 Because adolescents are more susceptible to social influence and peer pressure, social media and mobile technologies may be effective strategies for educating and engaging asthmatic adolescents.2
Parents in the Swedish focus group said they wished teachers had more knowledge about caring for a child with asthma.2 A Turkish study found gaps in knowledge about asthma among elementary school teachers, including how to recognize symptoms and triggers of asthma and how to treat it.2 Further, many teachers were not aware of asthmatic students in their class.2
An asthma diagnosis can deter children from participating in physical activities, which, in turn, can lead to issues with social well-being and overall quality of life.1 Although not conclusive, some studies have found that lack of physical activity can further exacerbate existing asthma symptoms.1
Soccer has become the sport of choice for many children across the globe.1 Because soccer requires continuous activity, it can spark an asthma attack1; however, despite these trends, researchers could not find specific, validated protocols for how coaches should deal with youth players with asthma.1
A Canadian study surveyed 513 Canadian soccer coaches, the majority of whom coached children ages <5 to <11 years, about their knowledge and attitudes about asthma.1 The overwhelming majority (93%) said they had never received asthma-related training.1 Further, 59% of coaches surveyed had never discussed with parents a plan to follow if a player has an asthma attack.1
The good news is that the majority (91%) of coaches surveyed said they felt incorporating asthma management protocols into coach training would be beneficial, and they would be interested in asthma training if it was developed by their soccer organization (85%).1 These results present an opportunity for physicians to collaborate with youth sports organizations to ensure coaches have the right training to intervene should an asthma emergency occur on the field.
Future Research
When looking at how physicians can better serve pediatric patients with asthma, recent research shows that children may be willing to participate in research studies. A European study using puppets and a child psychologist to evaluate the emotional burden of asthma research on young children found that undergoing clinical research procedures doesn’t increase children’s reluctance to undergo future medical procedures.3
More specifically, the research, which involved children ages 5 and 6 years, revealed that children who are informed about having blood drawn in advance of venipuncture were more likely to consent to follow-up blood draws.3 Researchers concluded the previsit anxiety experienced by many asthmatic children is likely because they have a limited understanding of the nature and effect of clinical procedures, so explaining the venipuncture procedure to children ahead of time has a positive effect on how they experience the procedure.3
“Contrary to common belief, the experienced emotional burden of asthma research is limited, even if this includes invasive procedures such as venipuncture,” explained Anne M. Padding, lead researcher, Amsterdam UMC, Amsterdam, The Netherlands. “Clear prerequisite for this is to adequately inform the children. These results support the acceptability of children participating in medical research and can guide research ethics committees in evaluation of the burden associated with participating in medical research, stimulating evidence-based medicine.”3
Summary
Gaps in knowledge about asthma and its therapies are associated with nonadherence and lower disease control, highlighting the importance of improved patient, parent, and educator education.2 Developing age-appropriate interventions to improve adherence will be key in this effort.2
References
1. Sadasivan C, Cave A. Asthma and youth soccer: an investigation into the level of asthma awareness and training among youth soccer coaches. Open Access J Sports Med. 2019;10:17-31.
2. Desager K, Vermeulen F, Bodart E. Adherence to asthma treatment in childhood and adolescence – a narrative literature review. Acta Clin Belg. 2018;73(5):348-355.
3. Padding AM, Rutjes NW, Hashimoto S, et al. Young children experience little emotional burden during invasive procedures in asthma research. Eur J Pediatr. 2019;178(2):207-211.
