© Springer International Publishing AG 2017
Christina A. Di Bartolo and Maureen K. BraunPediatrician’s Guide to Discussing Research with Patients10.1007/978-3-319-49547-7_1010. Medications
(1)
The Child Study Center, NYU Langone Medical Center, New York, New York, USA
(2)
Department of Pediatrics, The Mount Sinai Hospital, New York, New York, USA
Keywords
Medication adherenceAntibioticsAsthmaAttention-Deficit/Hyperactivity DisorderInhaled corticosteroidsStimulant medicationOverview
When medications are taken as recommended—that is, when instructions are adhered to—they play a crucial role in modern medicine. The World Health Organization defines adherence as “the extent to which a person’s behavior—taking medication, following a diet, and/or executing lifestyle changes, corresponds with agreed recommendations from a health care provider” [1]. Medications lose their ability to prevent negative health outcomes and unnecessary health service usage when they are not taken as agreed upon by patient and doctor [2]. If physicians are not aware that their patients have been non-adherent, poor medication response may prompt physicians to increase the dosage or request more tests to achieve desired outcomes [2].
Physicians in pediatric practices encounter additional struggles with adherence [2]. Multiple accounts from parents and children create ambiguity when assessing for adherence [2]. Parental education during office visits is crucial, yet there is evidence that parents do not understand and recall all that is presented to them. One study found that within a 15 minute physician visit, parents remember approximately half of the information their doctors presented [3]. In particular, parents are most likely to recall the information presented in the first third of the visit, which typically focuses on diagnosis rather than treatment [3]. Not only must parents understand and agree to medication regimens, pediatricians must also, in many cases, obtain minimal levels of cooperation from juvenile patients [2]. Without children’s cooperation, parents frequently experience children spitting out medications, making adherence an even greater challenge [4]. Similar to other adult patients, parents may forget to deliver the medication or misunderstand the instructions [5]. Yet for pediatric patients, multiple caretakers may assume responsibility for medication administration, adding another level of complexity to an already fraught process [2]. The largest hurdles to medication adherence among pediatric populations are daily living stressors and family conflict [6]. One study found that the risk of medication non-adherence was 1.53 times higher in families with high levels of reported conflict than in families with low levels [7].
Among chronically ill patients, multiple factors undermine adherence: the extended nature of the illness, bouts of periodic symptom remission, and the common practice of prescribing more than one medication simultaneously. Estimates place adherence among chronically ill patients anywhere between 30% and 70% [8–10]. Pediatric rates of adherence in chronic conditions are even more variable, with studies reporting rates between 11% and 93% [2]. Adherence in chronically ill children therefore presents a double-barreled challenge [11]. Over the past 2 decades, child and adolescent diagnoses of chronic illness has steadily increased [12]. One study determined that approximately 68% of children diagnosed with a chronic illness subsequently receive a prescription for treatment [13].
Particularly among children who are chronically ill, parents may not give their children medications if they require more information to comprehend the diagnosis, worry that the medication will not produce the desired outcome, or fear medication side effects [14]. These uncertainties may cause the parent to discontinue treatment. For example, a child with asthma may experience a brief period of symptom remission, which is common in chronic illness. A parent with side effect concerns may use this opportunity to temporarily discontinue medication in order to mitigate what they perceive to be the risks of side effects [14]. Parents may also weigh the cost versus benefit of giving their children medication if they perceive any side effects or fail to observe improvements after initiating treatment [5].
This chapter reviews parental medication concerns in three areas: antibiotics, asthma, and Attention-Deficit/Hyperactivity Disorder (ADHD).
Antibiotics
Antibiotics are one of the most commonly prescribed medications in pediatrics for acute illness. Effective use of antibiotics have extended life expectancy, assisted cancer treatments, and made possible extensive surgeries and organ transplants [15]. Since the inception of modern medicine, bacteria have evolved to resist antibiotics. Even as penicillin underwent clinical trials, 50% of the Staphylococcus aureus bacteria developed resistance in just 10 years [15]. A persistent problem, antibiotic-resistant bacteria had been kept at bay in part by continuous development of new antibiotics [15]. In the past 2 decades, the number of pharmaceutical companies investing in antibiotic development has dwindled from 18 to 4 [15]. As bacteria develop resistance to antibiotics, strains emerge for which the scientific and medical community has no treatment, creating a significant public health threat [16].
While there are likely many causes for the increase in antibiotic-resistant bacteria, one proposed factor is the overuse of antibiotics [17, 18]. It is estimated that between 80% and 90% of antibiotics are prescribed within primary care settings [19]. Prescriptions for antibiotics in outpatient doctors’ offices are written more frequently for children than for any other age group [17]. As such, promoting careful use and avoiding overuse of antibiotics in pediatric practice has the potential to help stem the tide of antibiotic-resistant bacteria [20]. Extensive research has examined parents’ difficulties understanding the indicators for antibacterial treatment and the pressure physicians experience to prescribe antibiotics even when they are not indicated [21]. At the same time, press covering the overuse and dangers of antibiotics has created a subculture of parents who are wary of any antibiotic use for their children [22]. We review the current literature to familiarize practicing clinicians with the current landscape of parental concerns and the reality of the interactional nature of the consultation between patient and physician.
Asthma
We will also examine parental concerns regarding medication treatment for the most common chronic pediatric medical condition: asthma [23]. Asthma affects approximately 8.3% of American children [24]. There is evidence that uncontrolled asthma not only produces symptoms such as wheezing and difficulty breathing in the short-term but, over time, can also cause a restructuring of the airway, making normal breathing difficult to sustain in the long-term [25]. As asthma is caused by chronic inflammation of the airway, treatments focus on reducing this inflammation and preventing further deterioration of the airway [26, 27]. The most commonly used asthma control medications are inhaled corticosteroids, which are anti-inflammatory agents [28]. Research shows that when used as prescribed, inhaled corticosteroids are effective in reducing asthma symptoms and preventing future hospitalizations [27]. As such, physicians globally recommend them for asthma treatment [28].
Despite medical benefits, estimates suggest that only half of all asthmatic children adhere to their treatment plan [29]. Asthma control medications are subject to the three major components that negatively affect adherence to treatment: regular use, inconvenient delivery, and no immediately observable benefits [30]. In some cases, parents’ concerns about negative side effects contribute to lower medication adherence. Improving care to asthmatic children depends in part on sufficiently addressing parental beliefs and concerns regarding asthma control medicine [27]. We will review two common concerns in the research base regarding inhaled steroids for use with children.
Attention-Deficit/Hyperactivity Disorder (ADHD)
Attention-Deficit/Hyperactivity Disorder (ADHD) is a chronic psychiatric condition affecting children’s ability to control their attention, motor movements, and impulses [31]. While estimates vary, prevalence studies estimate that approximately 5% of American children are affected by ADHD, with higher rates observed in males [31]. Symptoms of ADHD typically reduce gradually with age, but individuals diagnosed with ADHD in childhood continue to show greater impairments than their unaffected peers throughout adolescence and often into adulthood [31]. Children diagnosed with ADHD show higher rates of other impairing behaviors such as opposition, aggression, temper tantrums, and uncooperativeness [31]. In adolescents with ADHD, higher rates of negative outcomes are observed than in peers without ADHD, such as discontinuing education, interaction with law enforcement, early onset substance use, conduct disorders, dangerous driving, gambling, and early parenthood [31–34]. Children and adolescents with ADHD also experience higher rates of learning disorders and emotional difficulties, such as anxiety, mood disorders, and low self-esteem [31].
Substantial debate among the public and some within the scientific community seeks to understand the nature of ADHD, both as a disorder and in terms of whether it requires medical treatment [35]. Because many symptoms of ADHD outwardly reflect normative child behavior (albeit to an extreme degree), some have argued against its classification as a psychiatric illness [36, 37]. The debate about ADHD as a diagnosis is closely linked to medical treatment of the disorder [35]. In addition to behavioral approaches, one of the primary recommended interventions for ADHD is stimulant medication [38]. Stimulants are the class of drug used to treat ADHD that most polarize and concern parents [39]. Despite its overall efficacy in treating the core symptoms of ADHD, most parents exhibit hesitancy and uncertainty regarding the decision to initiate medication treatment for their children with ADHD [40]. We will review the founded and unfounded concerns about side effects of this medication.
Common Parental Concerns
Better Safe Than Sorry Versus Antibiotics Are Overused
A commonly cited reason for parents’ misunderstanding about the correct usage of antibiotics is their lack of knowledge about differentiating between viral and bacterial infections. A survey of 400 parents inquiring into their past experiences with antibiotics provides evidence in favor of this argument [22]. In this sample, 32% of parents reported that they thought antibiotics were useful for treating colds, 58% thought antibiotics should be used to treat coughs, and 58% said antibiotics are appropriate for treating fevers [22].
Another study of over 1,000 parents showed that one-third believed antibiotics could help treat viral illness [41]. This study found lower knowledge about antibiotics was associated with parents with lower educational attainment, fewer children, and less exposure to information about antibiotic resistance [41]. Indeed, nonspecific symptoms such as fever and respiratory difficulties can proceed to more dangerous illnesses, a fact many parents are aware of [42]. Particularly for parents who cannot afford to take time off work to take care of a sick child, antibiotics are seen as a form of preventative treatment to ensure their child’s illness will not progress [42].
A subset of parents takes an opposing stance, that antibiotics are harmful or overused. In the sample of 400 parents surveyed in the study above, nearly one-third (29%) of parents reported concern that their children receive too many antibiotics [22]. 85% thought that too many antibiotics could cause problems [22]. Among the problems caused by over-prescription of antibiotics, 55% cited resistance, and 15% thought efficacy would be affected [22].
Even parents who are rationally aware that antibiotics are not currently indicated for their sick children still consider treatment options within a context of distress [42]. When concerned about risks, people tend to show a preference for choices that will mitigate risks, even when those risks are low in likelihood [42]. Parents can cognitively comprehend that antibiotics are not currently indicated, but their emotional state prompts a different line of thinking. This emotional component explains the failure of education-alone interventions to improve judicious antibiotic use.
Asthma Control Medication Slows Growth
Despite the proven efficacy of inhaled steroids for the treatment of pediatric asthma, parents remain concerned about potential side effects [43]. In particular, the effect of steroid use on growth has been extensively examined [43]. There is evidence that high doses of inhaled steroids temporarily slow growth trajectories in children [44, 45]. One meta-analysis reviewed pre-pubescent children with mild to moderate asthma who were in research trials that also tracked their growth [46]. Among these children, those who received higher doses of inhaled steroids experienced slower growth trajectories when compared to children on lower dosages [43]. The highest impact on growth occurs in the first year of steroid treatment [43]. Growth also appears to be more affected by older forms of steroid treatment than new ones, although the research in this area is less robust [47].
Pediatric care strives to effectively treat illness without affecting normal development [43]. Before the extensive research of the past 2 decades, researchers estimated that steroid use could slow growth by as much as 1.5 cm per year [43]. After many well-controlled and longitudinal studies, researchers conclude that steroid use does slow growth in children, but not by as much as was originally hypothesized [43]. Only one study was conducted that examined an older formulation of steroids and tracked growth longitudinally [43]. This “worst-case” condition resulted in an average 1.2 cm total loss in adult height [48]. While most conclude the benefits of controlling asthma outweigh these risks, parents are correct in weighing a legitimate risk of slowed growth trajectory against their children’s ability to breathe when considering treatment initiation.
Ambivalence Regarding Initiation of Stimulant Treatment
On a wide scale, the proliferation of stimulant prescriptions, such as Adderall (amphetamine and dextroamphetamine) and Ritalin (methylphenidate), for children with diagnoses of ADHD has troubled health professionals and parents alike [35]. In fact, the decision to start medication does not at all appear to be an easy one [49]. Parents decide to give their children stimulant medication because of the difficulties in raising a child with impairing symptoms [35]. Anecdotally, clinicians do not find that most parents quickly decide to initiate stimulant treatment. Backing up this clinical impression, a review of a Medicaid database revealed that approximately half of children diagnosed with ADHD do not begin stimulant treatment, and half of those who do discontinue within 1 year [50].
Initially, parents must decide how they feel about the ADHD diagnosis. The concept of behavioral challenges as stemming from a neurological disorder is not universally accepted [35]. Parental attitudes about ADHD medication are influenced by their general conceptions of psychiatric illness in children and the specific behavioral challenges of ADHD [51]. Among families, fathers generally show less willingness to accept the ADHD diagnosis than mothers [52–54].
Parents are commonly reluctant to try stimulant medication until other interventions have been attempted [55]. Some interventions parents try before initiating stimulants are evidence-based (e.g., behavioral modification) while others are not (e.g., dietary changes or homeopathic strategies) [55]. In cases where children are not at imminent risk of harm or school expulsion due to their ADHD symptoms, attempting other evidence-based interventions first is sensible [55]. However, exploring numerous unproven treatments before considering an efficacious stimulant treatment is conceptually similar to delaying treatment altogether [55].
Parents’ worries about stimulant side effects shed light on the individual struggles that underlie each prescription [35]. In one small study, a majority of parents cited academic goals as the primary driver for stimulant medication initiation [35]. Similarly, parents in another study who initiated stimulant treatment were most likely to do so when a clear functional impairment, such as academic difficulties, was present [56]. Fear for their child’s physical safety when not medicated also generally overrides parents’ fears about stimulant medication side effects [55]. Other parents who recognize that withholding medication in the short-term will likely create more significant problems later in the child’s life also tend to show higher adherence to medication [55]. Parents weigh the benefits of symptom improvement and subsequent functional strides against their concerns regarding side effects [35]. Each parent is willing to accept different types and severity levels of side effects to achieve desired outcomes for his or her child [35].
Even parents who choose to begin treatment for their children are typically concerned about the implications of their decision, both medically (as in the case of side effects) and philosophically. In addition to side effects, parents report concerns about using medication to improve behavioral outcomes [56]. Conceptualizing ADHD within a biomedical model facilitated medication acceptance in some parents [55, 56]. While some parents consider medication a temporary fix until their children age, others think of medication as a long-term mainstay in their children’s lives [35]. In some cases parents terminate treatment due to side effects or at their children’s request [35]. Many of these parents find themselves second-guessing treatment termination [35]. In other cases, parents exhibit continued ambivalence about continuing medication even after observing the clear positive effects of the medication on their child’s functioning [56].
Rather than think of stimulant medication initiation as a one-time decision, physicians should understand that over the course of many years, most parents revisit their decision to begin, delay, stop, or restart medication [56]. One study found that parents who thought of the medication decision as a process involving trial and error to find the right medication had more realistic expectations and a more positive experience with stimulant medications overall [55]. While current American Academy of Pediatrics guidelines do not explicitly recommend starting and stopping stimulant treatment, physicians will likely find themselves treating families who seek to understand the correct medication dosage and amount on this trial basis [56, 57].
Common Misconceptions
Parents routinely pressure physicians for antibiotics and will be disappointed if they do not receive a prescription
Among physicians, the concern that parents ask for antibiotics remains a persistent challenge. Physicians report pressure from parents (54%), lack of time (19%), and fear of litigation (12%) as contributing to their decision to prescribe antibiotics against clinical indicators [58]. One study queried 61 physicians as to their impressions about the state of affairs in antibiotics [22]. Among these physicians, 71% reported parents asked them for antibiotic prescriptions when not indicated at least 4 times in the previous month [22]. Of this set, 35% acknowledged they wrote the prescription against their better clinical judgment [22]. Those who study this phenomenon commonly point out that physicians in busy practices struggle to find the time to carefully review the indicators for antibiotic use with parents [22]. These researchers consider the issue a matter of cost–benefit analysis: physicians find it easier to write the prescription than trying to explain why they will not prescribe antibiotics [22]. Legal considerations are also hypothesized to affect clinicians’ decisions, particularly in cases where nonspecific fever could progress into an illness requiring antibiotic treatment [22]. The risk assessment for one child (which typically favors the “better safe than sorry” approach) stands in contradistinction to population risks, wherein a meaningful negative outcome arises from unnecessary antibiotic use [42].
However, this interpretation of the position in which physicians find themselves presupposes that the patient–physician relationship will be deleteriously affected by failing to provide an antibiotic prescription when requested. Studies have generally not found a link between patient satisfaction and whether or not they received an antibiotic prescription [59, 60]. In light of persistent physician concerns regarding parental pressure to prescribe, researchers have undertaken the process of examining how these conversations unfold.
One study reviewed 60 videotaped interactions between parents and physicians [61]. Researchers found that the interactions were more complex than a pressuring parent and resistant physician. Parents brought in their children to see the pediatrician for one of two reasons—either to obtain reassurance that their child is not critically ill or to receive validation of the severity of their child’s illness [61]. Whether or not parents were expecting an antibiotic was tied to their perception of the severity of their children’s illness [61]. Parents upset about their children’s symptoms did not appear to be seeking antibiotics per se, but rather, clinical concern and appreciation for the severity of their child’s suffering [61].
Regrettably, researchers found that when physicians explained the difference between viral and bacterial infections, they inadvertently projected subtle cues that viral infections are less severe in nature [61]. Researchers hypothesized that parents who are worried about the severity of their children’s illness are more upset by receiving the message that their child is not significantly ill more than they may be about not receiving an antibiotic prescription. These parents want guidance as to how their child will be treated. Rather than directly compare viral infections to bacterial ones, physicians who find a viral infection in children can focus on the treatments and symptom management they would recommend for those children [61]. By focusing on what the child has (a viral infection) rather than what the child does not (a bacterial infection) physicians focus their time on the interventions that are likely to be successful, thus sending the message that they care about delivering good care [61]. If a parent were to subsequently make a direct inquiry about antibiotics, the clinician could explain that viral infections are caused by a mechanism that antibiotics have no influence over, without comparing symptoms or severity between viral and bacterial infections.
Children will build a tolerance to their asthma medication, requiring increasingly higher doses over the years
Inhaled corticosteroids, the mainstay treatment for pediatric asthma, unfortunately touch on two considerable fears among parents. Parents may have trouble separating the dangers of inhalants as a form of drug abuse (i.e., “huffing” toxic substances to obtain a high) from medications with an inhaled delivery [62]. Second, parents are likely aware of the dangers of anabolic steroid use, given their prevalence in the world of professional sports [62]. As a result, it is supposed that parents project these fears onto inhaled corticosteroid use for their children [62]. Stories of steroid abuse and general addiction cause concern among parents that giving their children an inhaled steroid daily will drive addiction [62]. Education alone does not appear to be sufficient—among one sample of parents with addiction fears, two-thirds reported that they felt they had received sufficient education about their child’s treatment [62]. This finding supports the growing body of evidence that education alone is not capable of allaying parental concerns and, by extension, increasing adherence.
Even parents who agree to initiate treatment for their children show ongoing fears, some of which may prompt them to reduce adherence [27]. Just over 20% of a sample of parents who agreed to medication initiation still believed that their children could become addicted to the steroids in their medication [63]. Another study found that while 75% of parents felt asthma control medications were necessary for their children’s health, 34% still voiced strong concerns about those medications [27]. When weighing the necessity of medication against perceived risks, it would appear the concerns about medication regularly overtake necessity: only approximately 20% of this sample reported complete adherence [27]. One-third of parents in another study wanted to stop their children’s steroid treatment as soon as they possibly could [63].
Parents of children with more severe symptoms are more concerned about medication risks than parents of children with mild symptoms [27]. Parents’ concerns about the medication were associated with medication adherence—the more concern they had, the less adherent they were [27]. Taken together, these results imply that less adherent parents are not less concerned about their children’s health—in fact, these parents witness more severe symptoms than more adherent parents. However, their concerns about medication outstrip their worries about the illness itself. As children with more severe symptoms receive higher doses of medication, it appears that parents’ concerns about medications are in proportion to the prescribed dosage.
A study examining parents’ concerns regarding asthma medication in a Malaysian sample supports this conclusion. Among 170 parents of children with asthma, 112 expressed concerns regarding medication [62]. Among these parents, the 2 most commonly cited fears were side effects (94%) and that their children would become dependent on the medication and require higher dosages over time to maintain proper lung functioning (86%) [62]. Again, parents with concerns showed increased likelihood of missing dosages of their children’s medications [62]. Their children also visited medical offices more frequently than children of parents without these concerns [62]. Overall, parents with concerns about medication had children who were prescribed higher doses of medication [62]. This supplements the above finding that more concerned/less adherent parents have children with more severe symptoms [62].
Counter to many parents’ impressions, guidelines recommend beginning children on the optimal dosage according to symptoms and then gradually decreasing the dosage over time in accordance with response to treatment [64]. Parents who stop their children’s treatment outside of this protocol will see a re-emergence of symptoms. One controlled study measured outcomes of children who are first optimally treated on an inhaled steroid and then cease to take it [65]. Children who stopped (compared to others who continued) experienced an increase in asthmatic symptoms, increased need for emergency bronchodilator use, and increased airway responsiveness [65]. Halting children’s medications from fear of side effects unintentionally creates an acute condition from symptom re-emergence [64]. Increased medications, exactly what parents are attempting to avoid, become necessary to stabilize the child’s condition [64]. Daily control medication with dosage reduced in a stepwise fashion better controls asthma than relying on fast-acting treatment for emergent symptoms [64]. Following the recommended downward stepwise approach helps avoid the rapid cycling between managed and acute asthma symptoms [64].
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