Adherence to asthma therapy in the preschool child
Cynthia S. Rand
The Johns Hopkins Asthma and Allergy Center
5501 Hopkins Bayview Circle
Preschool children's adherence to asthma therapy is often sub-optimal and can result in decreased quality of life for children and parents, as well as an increased risk for dangerous asthma exacerbations. Asthma management for the preschool child presents some unique challenges to adherence to therapy, including the child's limited ability to communicate, multiple caregivers responsible for medications, and parental concerns about medications. Parent beliefs, characteristics of the regimen, and family functioning have been associated with adherence levels. Understanding and improving adherence to asthma therapy for the preschool child will necessarily require addressing these age-specific concerns.
Successful asthma management in the preschool child is dependent on parental adherence to the prescribed asthma treatment plan. Because asthma symptoms generally begin prior to age four (1), most children initiate asthma therapy by the preschool years. Parents' first experiences with asthma management are typically the episodic use of a beta-adrenergic agent or short bursts of oral corticosteroids to control their child's initial asthma symptoms. By the time a diagnosis of asthma is made and the need for controller medications is confirmed, many parents have long-established patterns of treating their child's asthma on a symptomatic basis. Learning how to manage asthma on a chronic, prophylactic basis can be difficult.
Preschool children present some adherence challenges unique to their age. Because most preschool children have limited language skills, communication about asthma symptoms and medication use will necessarily be limited to conversations with the child's caregiver. The child's communication and cognitive limitations may complicate a parent's ability to gauge the need for rescue medication. Most parents must rely on other caregivers during the day (e.g. day-care centers, babysitter, grandparents, siblings, etc.) and therefore asthma medication administration responsibility will necessarily be shared among these caregivers. Although preschool children are generally too young to assume any responsibility for medication self-administration, in some families even preschool children may be required by circumstances or parent expectations to use medications independently. Families of very young children may be very reluctant to initiate daily medication therapy because of concerns about long-term side-effects. Understanding and improving adherence to asthma therapy for the preschool child will necessarily require addressing these age-specific concerns. This review presents a broad overview of research and issues in pediatric adherence, with a particular focus on the preschool age child.
Consequences of children's nonadherence to asthma therapy
When children fail to adhere to prescribed asthma therapy they may increase their risk for unnecessary asthma exacerbations that require trips to the emergency room or hospitalization. In early studies, theophylline levels were used to assess the relationship between asthma therapy nonadherence and risk of urgent care use. Wood et al. (2) measured the theophylline adherence levels of 144 urban, low-income children seen at the Children's Hospital of Philadelphia emergency room for acute asthma attacks. They found that 34% of the children had theophylline levels in the noncompliant range (<5 mg/ml). While 66% of the children were classified as “compliant”, only 26% of the overall sample had theophylline levels in the “therapeutic” range of 10–20 mg/ml. Becker et al. (3) and Sublett et al. (4) also examined theophylline levels of children with an acute asthma attack admitted to the emergency room. Becker et al. found detectable levels of theophylline in only 66% of the 80 children tested, while Sublett et al. found that theophylline levels were low (<10 mg/ml) in 98% of the children in their sample.
Pediatric nonadherence continues to be linked to high risk (5). Milgrom et al. (6) have reported on the relationship between documented nonadherence with inhaled corticosteroid (ICS) therapy and acute asthma exacerbations requiring a burst of oral corticosteroids. Twenty-four children age 8–12 years were enrolled in an asthma study that used asthma diaries and electronic monitoring to track adherence to ICS therapy. They found that the median adherence of the children requiring a prednisone burst (N = 8) was 13%, compared to 68% adherence for children without severe exacerbations. This study illustrated dramatically the potential acute impact and risk associated with children's nonadherence to ICS therapy.
Frequency of children's nonadherence to asthma therapy
There has long been a recognition that children's nonadherence to asthma therapy is a significant problem in asthma management. Research which has quantified the frequency of pediatric nonadherence across a range of chronic illnesses such as diabetes, rheumatoid arthritis and cystic fibrosis has found that adherence levels at or below 50% of prescribed dosage are common (7). Studies of children's adherence to asthma therapy have reported similarly poor average rates of adherence.
Coutts et al. (8) published the first study to examine children's adherence to anti-inflammatory therapy using an electronic monitor. Fourteen children, age 9–16 years with moderate to severe asthma who were using prophylactic inhaled corticosteroid therapy were monitored using a Nebulizer Chronolog Metered Dose Inhaler (MDI) monitor, which recorded the date and time of each use on an electronic chip. Children were monitored for 2–6 months and asked to maintain asthma diaries as well as use the monitored inhaler. Despite symptomatic asthma, underuse of the inhaled steroids was observed on 55% of the study days. Overuse occurred on only 2% of study days. Seven children failed to take any controller medication on at least one of the study days.
Milgrom et al. (6) conducted a study of school-age children's adherence to ICS using electronic monitors. Participants were unaware of the function of the electronic device. Diary card data showed that patients reported taking all doses on a median of 54% of study days and at least one dose on 97% of study days. However, electronic records of ICS use showed only a median of 5% of study days with all ICS uses taken and a median of 58% of days with at least one dose taken. Participants skipped all ICS doses on a median of 42% of days. Almost half of the children missed their steroids completely for more than a week at a time.
Gibson et al. (9) evaluated preschool children's adherence to inhaled prophylactic medication using electronic monitoring. The investigator observed generally poor and variable adherence among the 29 asthmatic children (age 15 months to 5 years) in the study group. Median adherence was 50% of study days having full adherence, with an overall median of 77% of the prescribed doses taken during the average 2-month monitored period. In this study dosing frequency was unrelated to adherence. It is important to note that the observed poor adherence occurred among a group of parents who had a clear understanding that adherence was being monitored, and who had been provided with careful explanations of the importance of adherence to prophylactic medications. The authors note that this poor adherence might reflect persistent misunderstandings or concerns about the side-effects of the medications.
Vargas and Rand (10) examined medication adherence among a sample of low-income African-American children with asthma aged 6–12 years who reported using at least one anti-inflammatory medication. Forty-two per cent reported having had symptoms 1–7 days per week over the past 6 months. Electronic monitoring over a 2–3-week period found that no single subject took the medications as prescribed for the full observation period. Subjects had a mean daily percentage-prescribed anti-inflammatory usage of 61%. Seventy-five per cent of the subjects had at least 1 day of overuse, more than 85% had at least 1 day of no use and 50% had 80% or more days of no use or underuse. Celano et al. (11) have also examined adherence to anti-inflammatory metered-dose inhalers in low-income, urban, primarily African American children (age 6–17 years). Metered-dose inhaler adherence was determined by weighing canisters and calculating the ratio of the number of puffs used over the study period to the number of puffs prescribed. Estimated MDI adherence in this study was 44% of prescribed use for all participants, with only 12% of the children having adherence levels above 75%.
Jonasson et al. (12) assessed adherence with inhaled budesonide administered via Turbuhaler in 163 children (age 7–16 years) with mild asthma who were participating in a randomized, double-blind clinical trial. Mean daily diary adherence was 93% over the 12-week study; however, Turbuhaler dose counting found only 77% adherence. Further analyses found that children younger than or equal to 9 years of age had significantly better adherence than older children.
The life of a parent is generally hectic, with multiple responsibilities in the family and workplace. Juggling the schedules of several children and adults is a common and understandable contributor to missed medication doses. Erratic adherence refers to missed doses, underuse and drug “holidays” which are attributable to forgetfulness, changing schedules or busy schedules. Parents who are erratic nonadherers understand their child's prescribed regimen and plan to give their child's asthma medications appropriately; however, despite these good intentions, they find that they have trouble complying because the complexity of their lives interferes with adherence, or because they have not prioritized asthma management. Parents who have changing work schedules or chaotic lifestyles may have difficulty establishing the habit of a new medication regimen. For some parents weekday adherence is fine, but weekends or holidays disrupt medication routines.
Parents may be inadvertently nonadherent with the prescribed asthma therapy if they fail to understand fully what medications their child should take or how to take them. In addition, if parents do not understand the importance of regular daily adherence with controller medications they may discontinue use when their child's symptoms improve. This form of unintentional nonadherence has been called unwitting nonadherence. Studies have found that patients often forget instructions given to them by a physician during a clinic visit (13). Inhaled asthma medications generally do not have attached labels that list dosing instructions, which may contribute to parents forgetting dosing regimens. It is common for parents to misunderstand the difference between rescue medication and controller medication; or they may interpret the prescription for “ICS twice every day” as meaning “ICS twice every day − when you have symptoms”. Parents may overuse their child's inhaled beta-agonist (either MDI or nebulizer-delivered) because they have never been given clear guidelines for when to discontinue home treatment and seek medical assistance.
Intelligent (deliberate) nonadherence
Sometimes parents change, stop or even fail to start asthma therapy on purpose. This deliberate nonadherence is called intelligent nonadherence, reflecting a reasoned choice, rather than a necessarily wise choice (14). When children are no longer symptomatic parents may decide that they no longer need to give their child the prescribed medications. Concerns about the short or long-term side-effect of asthma medications on their child's health may cause some parents to reduce or discontinue dosing. Parents may abandon a therapy because the child objects to the taste, making it a daily struggle to administer. If the burden of providing the therapy interferes with family daily life parents may conclude that the disadvantages of therapy outweigh the benefits. Parents may find that some variation of the prescribed therapy works better for their child than the doctor-prescribed regimen. In fact, many children may manage quite well with altered or reduced dosing. Deliberate nonadherence, like all nonadherence, does not necessarily result in worsening asthma. When parents alter their child's prescribed asthma regimen the family physician may never uncover this modification. Parents may be hesitant to tell their child's pediatric consultant candidly that they have not followed “doctor's orders”. Physicians will need to use sensitive interviewing and active listening in order for parents to feel comfortable discussing actual patterns of medication use.
Factors related to children's adherence with therapy
The causes of poor adherence are multifold. Parents may fail to adhere because of barriers related to beliefs about therapy or asthma, limitations in the understanding of the regimen, or because of difficulties in implementing or routinizing the regular use of preventive medications (7).
Most health-care professionals and parents would agree that the preschool age child is too young to assume responsibility for asthma medication self-administration. Not only are young children's skills in using medication delivery devices such as MDIs very limited, but also preschool children are not developmentally capable of the judgments necessary to use asthma medication appropriately. Fortunately, in most families, parents and other caregivers administer all asthma medications to children under the age of six. However, in some families the age at which a child begins to use medication independently may have more to do with the circumstances of the school or home setting (e.g. working parents) than with the child's developmental readiness for the responsibility. Research suggests that in some settings children may be being expected to self-administer asthma medications at very young ages, when their understanding of their asthma and asthma medications is limited (15). Studies indicate that asthma self-management is occurring by 4–6 years of age. In a study by Brown et al. (16) children participated in asthma management by 20 months of age, yet their mothers did not expect asthma self-management until school age (16). According to their mothers, children in this study took one (34%), two (48%) or three or more (10%) asthma medicines daily. Children between 20 months and 6 years would fetch their medicine, hold the cup or the spoon, plug the nebulizer in and hold the mask or use the spacer (around 6 years of age).
Family functioning and organization
Successful asthma control for the preschool child requires that a family develop and implement a regular daily asthma management plan. When the daily life of the family is chaotic, communication between family members is poor and children's' asthma management can suffer. Families dealing with life stressors or crises such as other family illness, unemployment or depression may be unable to assume the responsibility of their child's complex medical requirements (17). Chaotic family life has been associated with children who have moderate to severe asthma admitted to a tertiary care hospital (3, 9).
Taking care of a child with asthma may contribute to family stress and place strain on available resources. The additional demands of caring for a child with asthma can include lost work days, costs and time associated with asthma medical care, as well as the emotional burden of chronic anxiety about the child's wellbeing. Asthma can impact on the whole family in multiple ways, including altering family plans and increasing sibling jealousy.
Family communication has been shown to be related to adherence to asthma therapy. Christiaanse et al. (18) evaluated adherence to medication use in a study of 38 children attending an allergy clinic. Poor adherence was found most often in families with high conflict (dysfunction) and high levels of child behavior difficulties. Dysfunctional families with chaotic households may find the demands of caring for a child with asthma overly burdensome and beyond their capacity to cope, resulting in poor asthma control for the child.
There can be great diversity among families in how medication management is implemented. Day-care providers, grandparents and siblings may assume responsibility for regular asthma medication delivery in some households. In chaotic, troubled families primary responsibility for medication monitoring may be confused. Because of the potential for variable and often changing family responsibility for a child's medication use, it is important for clinicians to review with both parents how they are monitoring medication use across all caregivers.
Parent knowledge about asthma and asthma therapy
In order to adhere appropriately to prescribed therapy parents must necessarily know what medications they are supposed to use and understand why and how to use asthma medications. Research suggests, however, that parents' knowledge of their child's prescribed regimen is often inaccurate. In a study by Donnelly et al. (19) 128 Australian parents of children with asthma were interviewed about their asthma knowledge, attitudes, beliefs and their knowledge of asthma medications. Only 42% of parents had a basic understanding of the mode of action of beta-agonists, 12% of methylxanthines, 12% for cromoglycate and 0% for inhaled steroids. Close to 50% of the parents reported that sodium cromoglycate and inhaled steroids were used to prevent asthma attacks, while 40–50% were unsure of the mode of usage. Use of other therapies to treat asthma was common, with over half of the parents reporting that they used antihistamines, antibiotics and decongestants in treating their child's asthma. The authors suggest that this poor parental understanding of asthma medications may result from inadequate doctor–patient communication and this misunderstanding may contribute to the high prevalence of nonadherence in asthma.
In a telephone survey of adult asthmatics who had been prescribed inhaled corticosteroids (ICS) Boulet (20) found that misperceptions about the side-effects and long-term consequences of this therapy were common. Thirty-eight per cent believed that ICS doses would need to be increased over time to maintain effectiveness while 36% believed that ICS therapy becomes less effective over time. Concern about side-effects was high (59%), with the most frequently cited fears being weight gain (29%) and building huge muscles (24%). Boulet and colleagues concluded that information about the safety and usefulness of ICS does not seem to have reached many asthmatics.
Parents may also fail to understand the specifics of their child's prescribed regimen. In a study by Vargas and Rand (21) parent reports of the prescribed regimen (i.e. type of medication, doses per day, number of puffs) were compared to the child's primary care physician reports. Overall concordance between parent-reported and physician-reported inhaled asthma regimen was poor. A total of 96 discrepancies were observed in 112 medications reported. Only three of the subjects showed perfect concordance with their physician-prescribed inhaled asthma regimen for all medications. Seventy-two per cent of all the medications reported showed at least one discrepancy (15) and others (22–24) have reported similar discrepancies.
Research that has examined pediatric adherence to therapy for chronic diseases has found that characteristics of the prescribed treatment regimen are significantly related to levels of adherence (7, 25). Overall, the longer the duration of therapy, the more frequent the dosing and the more complex the regimen (e.g. multiple devices or tasks), the poorer patient adherence. Actual or perceived treatment side-effects and the cost of therapy can also reduce adherence levels (25, 26).
Little is known about patient adherence related to route of administration. One study by Kelloway et al. (27) compared adherence to oral (theophylline) and inhaled (corticosteroids and sodium cromoglycate) asthma medications using medical records and pharmacy data (prescription refill patterns) in 276 patients divided into two age groups (12–17 and 18–65 years). This study showed that both groups were significantly more adherent to oral theophylline compared with either ICSs or inhaled sodium cromoglycate. It is important to note that form of therapy was not assigned randomly in this study, but rather based on patients' existing prescribed regimens. One factor for the difference in adherence might be the route of administration, i.e. oral vs inhaled, while another might be patient preference. Those patients still taking theophylline at the time of the study may have preferred this therapy because they achieved satisfactory control of their symptoms.
It is generally assumed that simpler asthma regimens result in better adherence. However, while the evidence is convincing that dosing regimens greater than twice a day lead to decreased adherence (8, 28), the data are less convincing that once-a-day dosing is superior to twice-a-day dosing (29–31). For some patients once-daily dosing may simplify their daily regimen and decrease inadvertent missed doses due to forgetting. However, for patients who intentionally decrease or discontinue therapy because they believe that they no longer need to use it (20) or because they are concerned about side-effects (32), once-daily dosing is unlikely to improve adherence (33). Once-daily asthma therapy appears to be the expressed preference for most patients. Venables et al. (34) examined patient preference in asthma therapy and found that 61% of patients expressed preference for once-a-day treatment, 12% preferred twice-a-day treatment and 27% expressed no preference. While addressing patient preference may not necessarily lead to improved adherence, it may decrease the burden of therapy and improve patient's quality of life.
Parent beliefs about asthma and asthma therapy
Parents' willingness to administer daily controller medication to their child is dependent on their acceptance that their child's asthma is a chronic disease that requires preventive treatment. Parents must feel comfortable that the prescribed therapy is necessary, effective, and above all completely safe for their child. A number of studies have confirmed that parent and patient beliefs about their asthma and the prescribed therapy are strongly associated with the likelihood of adherence.
A study by Adams et al. (35) illustrates clearly the relationship between asthma beliefs and adherence to preventive therapy. The investigators interviewed adult asthma patients in Wales about their beliefs about their illness. Patients who claimed that they did not have asthma or reported that they had “slight” or “not proper” asthma were classified as “deniers/avoiders”. These patients reported that asthma had no effect on their lives and they rarely took their reliever medications. With additional questioning, however, these patients often revealed that they used their reliever surreptitiously and that they had developed complex avoidance behaviors to avoid physical symptoms (e.g. not running, staying indoors in certain seasons). None of these patients was using their controller asthma medications. These patients rejected the label of “asthmatic” (which they considered stigmatizing), and instead described their breathing difficulties as an acute, situation-specific problem or as a “bad chest”. Those patients classified as acceptors, on the other hand, accepted the chronic nature of asthma and had internalized the social identity of “asthmatic”. Patients who accepted their asthma diagnosis tried to lead a normal life through the use of good asthma management behaviors. In contrast to the deniers (who perceived asthma medications as a source of stigma), accepters saw these medications as an aid to a normal life. Accepters were most apt to use preventive asthma medications. Patients classified as pragmatics may not have embraced an asthma diagnosis in the proactive manner of the accepters; however, they were attempting to reconcile their lives and self-image with the social identity of “asthmatic”. While they used their controller medications, they might not have been using them in the approved manner. Pragmatists' levels of openness about their asthma shifted according to the relevant audience. This study of patient beliefs suggests that beliefs about the nature and meaning of asthma and asthma treatment are important factors in adherence to preventive asthma therapy.
Whether a parent considers their child's health to be fragile or vulnerable (based on real events or not) may be an important factor in whether they persist in being vigilant and adherent to health-care recommendations. Spurrier et al. (36) examined the relationship between asthma management strategies used by parents of children with asthma and the parent's perceptions of their child's vulnerability to illness. The study found that after controlling for the frequency and severity of asthma symptoms, those parents who felt their child had greater vulnerability to illness were more likely to use regular preventive medications, take the child to the doctor and keep the child home from school. The authors suggest that one possible explanation of this finding is that “parents who do not perceive their child to be medically vulnerable may discontinue administering regular medication…” (36, p. 92).
Parents and patients, who are concerned about using steroids, may under-dose or discontinue long-term use in a self-determined effort to be “steroid-sparing”. Boulet (20) conducted a telephone survey of over 600 adult patients with asthma in order to understand patient perceptions about the role of ICS in the treatment of asthma and the potential side-effects of this therapy. Thirty-nine per cent of those surveyed had used intermittent or regular ICS in the past year. Although most of patients self-classified their disease as “mild”, the high level of symptoms reported suggested that patients might be underestimating the severity of their disease. Patient concerns about long-term use of ICSs were common. Forty-six per cent of these patients indicated that they were reluctant to take ICS on a regular basis and only 25% of patients reported that they had discussed their fears and concerns about ICS with their primary care provider.
Chambers et al. (32) surveyed 694 patients with asthma, ages 18–49 in the US who had been prescribed ICS in 1995–96. Although the majority of these patients were symptomatic and reported experiencing night-time or daytime symptoms within the past 4 weeks, 62% of these patients reported less than twice-daily ICS use on a regular basis. For patients who were not fully adherent the most frequent reason cited was that they only used therapy when they believed they needed it. This is consistent with a patient belief that their asthma is an episodic disease, rather than chronic disease, and that therapy can and should be adjusted to match disease exacerbations. The high level of symptoms reported by this group, however, suggests that underuse of ICS may have contributed to poor asthma control and increased risk of severe exacerbations.
A family's ethnic culture and lay beliefs about their child's illness and treatment may also influence acceptance of asthma therapies. Individuals from ethnic minorities may have different health belief systems or health practices than those of the biomedical practitioner. Families with health beliefs that are divergent from their child's doctor may distrust prescribed therapies and seek to manage asthma symptoms with alternative therapies. Pachter and Weller examined the relationship between culture and asthma adherence in inner-city Puerto Rican families attending an asthma clinic (37). They found that theophylline adherence (as measured by serum levels) was low overall, with only 15 of 28 patients classified as adherent. Language preference, child age, disease severity and socioeconomic status were unrelated to adherence. However, greater family acculturation (i.e. the degree to which the family were integrated into American culture) was significantly associated with higher adherence.
Assessing children's adherence to asthma therapy
Although physicians rely on clinical judgment for many aspects of patient management, physicians' assessment of patient adherence is often wrong, with accuracy rates often not much better than chance (23, 24). One reason for these inaccurate assessments is the frequent failure of the clinician to ask families directly about how they are administering the prescribed medication. Medication adherence issues may never be discussed with parents unless “clinical judgment” leads to a conclusion that the family is grossly nonadherent. When the clinician does query the parent about adherence the specific communication strategy used may discourage parents from expressing difficulties and concerns candidly about their child's therapy. Questions about medication use may presume appropriate use, such as, “You aren't having any problems giving Peter his medicine are you?” or “You're giving Anna her medication the way we discussed?” Use of closed-ended questions such as, “Are you giving Hans his inhaler?” will tend to limit answers to yes/no responses, rather than useful information about irregular inhaler use, reduction of doses or episodes of reliever overuse. Effective communication about medication use requires asking questions that reveal rather than conceal the complexity of appropriate medication adherence over time. Steele et al. (38) found that physicians who used open-ended, information-rich interviewing strategies were significantly more likely to classify accurately the true adherence levels of their patients than were physicians who used information-poor, closed-ended questioning. Effective adherence assessment will include questions about current and past patterns of use for each prescribed medication, frequency of quantity and of PRN inhaler use, patient beliefs about the efficacy of treatment and their ability to comply, patient criteria (as opposed to provider expectations) for adequate adherence and discussion of any financial, physical, psychological or social barriers to adherence.
Querying parents about their child's adherence to a prescribed asthma regimen can be a highly sensitive topic. For younger children where parents assume full responsibility for administering medications, acknowledgment of a failure to adhere fully may be perceived as being tantamount to professing to be an irresponsible parent. Concerns about being judged negatively by the clinician and being classified as a “bad” mother or father may encourage exaggerated reports of adherence to therapy.
Multiple studies have documented the limited validity of parent and child self-reports of adherence to asthma therapy (39). Coutts et al. (8) conducted a study in which children with asthma were asked to record their adherence to an inhaled prophylactic medication on a diary card while their MDI use was electronically monitored. All children in this study were aware of the monitoring and still reported better adherence on the diary cards than what was recorded electronically. For example, patients on three times a day therapy self-reported being fully adherent on their diaries on an average of 90% of study days. Electronic measurement recorded that these patients were actually adherent on only 34% of these days. While patient over-reporting has been accepted as a norm, the degree to which they over-report may not have been clear prior to these studies.
Similarly, Milgrom et al. (6) have reported marked discrepancies between patient diary reports of adherence and electronic records. In this group of families who had all received asthma education, more than 90% of patients exaggerated their level of adherence, with even the most nonadherent children providing diary data consistent with a high level of adherence.
With health system databases it has become increasingly feasible to monitor patients' medication adherence by examining pharmacy databases. In some settings clinicians can access pharmacy records directly to determine patient refill rates of asthma medications. These data can be used to calculate roughly the average dose per day. Dispensing data can be also be matched with medical record and health care utilization databases to provide integrated analyses of the antecedents and consequences of patient adherence behaviors. Pharmacy data reviews can reveal refill-based adherence patterns for different classes of medication or dosing regimens. For example, Kelloway et al. (27) examined pharmacy claims data within a health maintenance organization and found that patients with asthma were significantly more adherent to prescribed tablet medication (theophylline) than to two inhaled anti-inflammatory medications (ICS and inhaled cromolyn).
Pharmacy database review to identify nonadherence has several limitations. First, adherence estimates can be calculated only for patients who exclusively rely on the target pharmacy system for all prescriptions and refills. Patients who use “out-of-network” pharmacies will have incomplete refill data. Secondly, pharmacy data can determine when a prescription was filled; however, it provides no confirmation of consumption or appropriate patterns of medication use. Pharmacy database reviews cannot determine if medications sit unused, are hoarded for future use, are shared or given to family and friends or are taken inappropriately. Nevertheless, as more pharmacy data go online, this adherence-measuring strategy has great potential to “be applied comprehensively, inexpensively and unobtrusively to a large number of individuals” (40, p. 1370).
Electronic medication monitors
In the past 15 years the increased availability of computer-based technology has introduced a new strategy for adherence monitoring. Electronic monitoring devices record and store the date (and for some devices, time) of each medication use. Devices have been developed to monitor medication adherence behaviors including, but not restricted to, opening a pill bottle and discharging inhaled medications.
Currently, the most widely used monitoring device for inhaled asthma medications is the MDILog™. The MDILog™ adherence monitor was developed by Medtrac Technologies (Lakewood, CO, USA). Use of the MDILog™ units allows us to collect monitoring data not only on actuation (discharge of medication), but also on components of inhaler technique (shaking the canister, inhaling medication, inhalation timing). Unlike the MDI Chronolog (an older technology) the MDILog™ confirms inhalation. The clinical trials model has a screen that can be set to provide either feedback or remain blank. MDILog™ units can record up to 1320 events, enough for several months of use at a time.
In recent years the number of published studies examining adult and pediatric adherence to asthma therapy using electronic adherence monitoring devices has increased dramatically. The primary benefit of this type of monitoring in adherence research is clear − electronic monitoring methods can provide a continuous, valid record of timing of presumptive doses over periods of months. Despite the advantages of such devices in the research setting electronic monitoring has yet to become feasible for the general clinical care setting. The costs of such devices are high and the technology is still highly vulnerable to failure without careful quality control and monitoring. Electronic monitoring may be appropriate and useful, however, when evaluating select patients with severe, difficult to manage asthma.
Improving children's adherence to asthma therapy
Research examining patient retention of information conveyed during a consultation has found that over half of all patients leave their clinician's office uncertain of their doctor's instructions and their prescribed therapy (13). The quality of doctor–patient communication has been found to be an important contributing factor in patient adherence (41, 42). DiMatteo (43) has suggested that “…for the therapeutic relationship to be successful and for the physician's advice to improve the patient's life, doctors and patients must communicate and agree on treatment goals. Patients must be given the opportunity to assess the potential risks or drawbacks in a proposed treatment and its potential effect on the quality of their lives” (43, p. 79). Cultural differences based on ethnicity, race, educational level, socioeconomic status and regional beliefs may influence the process of doctor–parent communication.
Parent beliefs about the benefits of asthma medications may not necessarily match those of the treating physician. As a result, some parents may elect to use home remedies as an adjunct to prescribed regimens, or may never initiate prescribed therapies (44), and these practices will not usually be revealed in the standard office visit. For many parents giving a child medications every day is troubling, particularly when the asthma is not currently symptomatic. In one study, urban African-American mothers of children with asthma expressed concerns that taking asthma medicine every day would cause the medicine to “not work as well when really needed” or, if used too often, lead to “addiction” to the medicine (45, 46). In some communities home remedies or over-the-counter drugs (teas, coffee, cough medicines, decongestants, etc.) for asthma are common and viewed as “safer” than prescribed asthma medications (19, 46). Effective doctor–parent communication requires recognition and respect for these alternate belief systems, and willingness to both educate and work with a parent's beliefs and concerns in identifying the optimal, acceptable asthma therapy.
It is important to explore parent beliefs about the prescribed therapy that might influence adherence. If a parent is frightened of giving their child a “steroid” medicine, then glib assurances that ICSs are safe may have little influence on the parent's willingness to administer this drug to their essentially healthy child. Selecting medications, delivery devices or dosing frequency should be a negotiated and individualized process between the clinician and the parent that considers not only the asthma severity, but the family's beliefs and concerns about medication, lifestyle, ability to pay for medications and preferences. During this open communication the clinician can provide the parent with education about their child's asthma, including the nature of the therapies, the correct use of inhaler devices and the overall importance of consistent adherence to asthma medications − even when the child is asymptomatic.
Expert guidelines on the management of asthma emphasize the importance of parent and patient education in the successful management of asthma (47). While most clinicians attempt to provide ongoing asthma education for parents as a part of their routine clinical care, often the rushed consultation visit leaves precious little time for this important activity. While a number of asthma education programs have been developed for older children and adults, few programs have been directed at the preschool age child and family (48). Asthma education programs targeted at elementary-age children have demonstrated effectiveness in helping children with asthma to improve overall management of asthma, decrease frequency and severity of asthma flares, decrease emergency room visits and hospitalizations, decrease school absences, increase children's self-confidence and self-esteem and improve children's school performance (49–52). While these programs are useful, by elementary age many parents and children with asthma have acquired patterns of inappropriate asthma management that may be difficult to change. Asthma education for parents and young children could have the benefit of developing and establishing effective asthma management practices early in the child's life.
Wilson et al. (53) have developed and evaluated a multisession asthma education program called the “Wee Wheezers” program, designed specifically for parents and preschool age children. The initial randomized trial was conducted with 76 children <7 years of age. No direct instruction for children less than 4 years of age was attempted. Asthma self-management education for children over 4 years included MDI use with spacers, recognition of early warning signs and triggers, alerting parents of asthma symptoms and deep breathing to remain calm. Central to the program was the development of an Asthma Action Plan for parent use of routine medications and at-home management of acute exacerbations. Families receiving the “Wee Wheezers” asthma education program demonstrated improved morbidity at 3 months: increased symptom-free days in the past 2 weeks, fewer nights of parental sleep interruption and increased parental asthma management compared with controls. This study suggests that parental asthma management as well as clinical outcomes can improve with parental and child asthma education.
Mesters et al. (54) have also developed an asthma self-management education program for parents with children 0–4 years. General practitioners, community nurses, asthma nurses and doctors in child health centers delivered this program. Initial focus group data indicated that parents of young (<5 years) children with asthma lack adequate knowledge of asthma, especially regarding medication, warning signs and preventive activities (55). Parents of children in the treatment group had significantly more knowledge and higher self-efficacy scores regarding performing asthma self-management behaviors than controls. Children in the treatment group reported decreased emergency and nonemergency use of the physician's office.
Based on data from these studies, three factors appear to be of critical importance in enhancing asthma management in very young children: 1) developmentally appropriate parent–child partnerships; 2) effective involvement of household and family members; and 3) supportive links between the family, school and health care settings.
As has been shown for older children and adults, young children's adherence to asthma therapy is often suboptimal. While the consequences of nonadherence for most children are limited to increased symptoms and decreased quality of life, for some children nonadherence can result in dangerous asthma exacerbation. The preschool child poses unique challenges for asthma management and adherence promotion, including the child's limited ability to communicate with the parent and clinician. Parents of very young children may be particularly concerned about the possible negative side-effects of daily medications; however, they may be hesitant to challenge recommendations made by the family doctor. If clinicians do not address these often unstated and unresolved worries directly it may prevent families from hearing or following recommendations. A significant challenge for the clinician is therefore to discover the parent's knowledge, beliefs and feelings about their child's asthma, to reinforce those that are appropriate and to encourage parents to change those that are not.
Clinicians are in a strategic position to help families develop the confidence that they can control their child's asthma and allow their child to lead unrestricted lives. Through careful listening to the family, parent and child education and ongoing adherence monitoring, a strong foundation for the future can be established for good adherence to therapy and successful asthma management.