The Many Faces of Nonadherence in Adolescents
Allergic diseases affect millions of adolescents and cause significant morbidity. Effective treatments for these diseases exist; however adolescents sometimes have trouble integrating these treatments into their daily lives. Nonadherence puts the adolescent at risk of poor outcomes ranging from poorly controlled chronic symptoms to life-threatening reactions, or, in rare instances, death. Adolescents’ decisions to adhere to treatment are complex and are often not dependent on any specific factor, but are the result of the interplay of many different variables. Contributing factors include denial of the disease, comorbidities such as anxiety and depression, the perceived severity of the disease and the effectiveness of treatment, knowledge and skills related to disease and treatment, family and peer support, side effects and other treatment-related factors such as cost, and how the treatment can be practically implemented into the daily life of the adolescent through routines and integration to schedules and school policies. Understanding which factors contribute to an adolescent’s adherence can help to individualize management solutions so the adolescent is motivated to adhere and is able to integrate treatment into their daily life.
KeywordsAdherence Asthma Allergies Allergic diseases Adolescent Nonadherence Medication Treatment
Allergic diseases, such as allergic rhinitis, asthma, and eczema, affect millions of adolescents [1, 2, 3, 4]. These conditions cause significant morbidity and mortality. For example, it is estimated that uncontrolled asthma was associated with nearly 14 million missed school days in the United States in 2013 . Many treatments exist which can help manage the symptoms of these diseases and prevent acute exacerbations. Unfortunately, many adolescents have trouble integrating these treatments into their daily lives. As a result of nonadherence, adolescents put themselves at risk of poor outcomes ranging from poorly controlled chronic symptoms to death. For example, children and adolescents who have asthma and lower levels of adherence to controller medications have higher risk of asthma exacerbation . There are many factors which contribute to adolescents’ medication taking behavior. Understanding the many faces of nonadherence can help healthcare professionals, parents, and adolescents develop strategies to successfully integrate treatment into their daily lives, thereby reducing their risk of adverse outcomes and improving their quality of life.
Multiple factors involved in nonadherence
Improper use of devices (inhalers)
Lack of instruction regarding proper use
Cost of medication
Concern about side effects
Difficult dosing (multiple times/day)
Dissatisfaction with health care professionals
Poor supervision, training, or follow-up
Dislike of medication
Anger/denial about condition
Limited access to pharmacy
Underestimation of disease severity
Susan is a 15-year-old girl. Susan is very competitive and likes to play soccer. Susan also has mild asthma. To manage her asthma, she is prescribed a daily low-dose controller medicine as well as a rescue inhaler. Her asthma is triggered by exercise as well as by seasonal allergies. Her mother reminds her to take her medication, and she is usually good about managing her asthma. Recently, she moved to a new school and has told her mother that “she’s not a kid anymore and doesn’t need to be babied.”
James is a 13-year-old boy. James likes to hike and play baseball. James is also allergic to peanuts, but he doesn’t like to talk about it. As a precaution James is supposed to carry his epinephrine auto-injector with him at all times. Unfortunately, the auto-injector is very expensive. In addition, James is often “on the go” and frequently forgets to carry his auto-injector with him. Fortunately, James does not have to use it very often. He also finds it difficult to speak up in groups and is reluctant to “announce” that he has a food allergy when going out to restaurants with friends or his baseball team.
Mary is an 18-year-old girl. In the spring, Mary graduated from high school and over the summer moved to a new town to start college . Mary has a roommate Beth who has a cat. Recently, Mary was diagnosed with allergic rhinitis. To manage her symptoms, Mary was prescribed a nasal spray. Mary dislikes using the nasal spray and often self-treats with an over-the-counter antihistamine. The antihistamine, however, often makes her drowsy, so she often goes without and experiences symptoms as a result. Beth also lets her cat go throughout their apartment, including on Mary’s bed.
Factors Which Affect Adolescents’ Treatment Adherence Behavior
Denial and Depression
The manner in which an adolescent views their self, their illness, and their place in the world may affect their ability to adhere to medications. Allergic diseases, while often diagnosed by a healthcare provider, are experienced first by the adolescent. The meaning or etiology the adolescent applies to these symptoms may not match those of the medical establishment. The adolescent may deny that they have the disease. For some, this may be due to differing illness narratives, where the adolescent attributes their symptoms to a different illness . In asthma, for example, parental illness models which differ from those of the medical establishment may contribute to nonadherence [8, 9].
Adolescents may also deny they have the illness altogether [10, 11]. This has been found in studies of adults with asthma, where issues such as stigma and negative perceptions of the illness contributed to denial . The negative connotations associated with the label of “asthma” made it such that individuals did not want to accept it as part of their identity. These feelings affected behavior, with those who denied or distanced themselves from asthma unlikely to adhere to medication use because to some, taking the medication would be synonymous with accepting that they have asthma. This finding has been confirmed among adolescents [12, 13, 14, 15]. As one adolescent stated in a focus group: “It’s like, trying to escape from it. Like, maybe if I don’t have to take the medicine it’ll go away, or like if I take the medicine then I’m like accepting the fact that I have this” .
Adolescents may also have views of medications which do not promote adherence. A general dislike of medications is common . Some adolescents with asthma may also hold these views, which contributes to nonadherence [15, 16]. As one adolescent stated: “I don’t think it’s [taking medications] a good idea and it’s really degrading like taking pills all the time… It like makes you feel ill, it’s a reminder sitting there saying you’re ill and it’s not nice , it puts you down taking pills” .
In addition to adolescents’ views of their illness and treatments, their views regarding themselves and their place in the world may affect their ability to manage their treatment regimens. Specifically, depression and anxiety have been linked to lower levels of medication adherence, including in asthma [17, 18, 19, 20]. This link has been explored in adolescents with asthma; however, the relationship between asthma, depression, anxiety, and adherence is still unclear [21, 22, 23]. While further work needs to be done to clarify this relationship, clinicians treating adolescents with asthma should monitor for symptoms of depression and anxiety and manage appropriately, as depression and anxiety have been independently associated, although not consistently, with worse asthma control and more exacerbations [20, 23, 24, 25].
Perceived Threat of Condition
Many adolescents explore their independence through taking risks, including nonadherence to treatment for their allergic disease . Contributing to this risk-taking behavior is a sense that the disease is not a threat. For example, among a sample of adolescents with food allergies, those who perceived their allergy to be more severe were more likely to be adherent to self-care behaviors, such as carrying their auto-injector with them (OR = 1.24 95% CI 1.01–1.52) . Another study of young adults with asthma found that the most common reason for nonadherence was lack of perceived need, driven mostly by a feeling that they felt well without using the medication . Similarly, qualitative studies have found that some adolescents link the severity of asthma with the necessity for using medications [14, 28, 29, 30]. For example, one adolescent discussed how her asthma wasn’t as bad as others, and as a result she doesn’t need to take her medication: “I think people have it [asthma] a lot worse than me and it’s like I just like don’t need it [corticosteroid inhaler] sometimes and I can go, I can go a few days without it…” .
For some adolescents, the threat of the disease wanes over time. In these situations, nonadherence may transition from an unintentional (i.e., forgetting) to a more active or intentional process as they experiment with whether or not they need the medications [12, 13, 28, 31]. In some cases, the adolescent stops taking their medicine altogether, but in other cases, this process of experimentation reinforces the need to take their medicine. For example, one adolescent stated: “When I first started it was OK but then I forgot a couple of times, and then I couldn’t be bothered to do it, to try and remember. I thought, ‘oh no, it’s not worth it, I’m alright, you know, I don’t need it.’ But I’ve found out since I’ve been taking it that’s it’s really helped me…” .
Perceived Value of Treatment
While for some adolescents, the threat of the disease can affect adherence, for others a contributor to nonadherence is uncertainty around the effectiveness or value of the treatment. If adolescents believe that the treatment is ineffective, they are less likely to adhere to the medication [12, 32, 33, 34, 35, 36]. For example, in one study, one adolescent described how he felt his inhalers worked so he took them, while he felt his other medicines did not work so he often forgot to take them: “I don’t usually forget to take my inhalers cos I know that they help, I can’t really feel the tablets helping so I usually forget to take them” .
Knowledge and Skills
Knowledge contributes to how an adolescent views their disease and treatment. Many adolescents often have misconceptions that may contribute to nonadherence. While there is some inconsistency , the literature appears to support a link between knowledge and adherence [22, 37, 38]. A reason for this inconsistency may be due to whether the parent of the adolescent was questioned about knowledge, as well as the shared responsibility for asthma management that occurs between adolescents and their caregivers. The difficulty in measuring knowledge likely also contributes to this discrepancy . However, there is evidence that adolescents may have knowledge of asthma and yet fail to act on that knowledge [40, 41]. In these situations, other barriers, such as forgetfulness, may affect an adolescent’s ability to adhere to medication [12, 36].
One example of how knowledge can contribute to nonadherence is a lack of understanding surrounding the differences between preventer or controller medications such as inhaled corticosteroids and reliever medications such as short-acting β-agonists [14, 32]. Such confusion may prove harmful for adolescents as they fail to gain the full benefit of controller medications, such as inhaled corticosteroids, if they use them on only an as-needed basis when they have symptoms [14, 42]. While this strategy in particular can be an effective treatment strategy for some specific patients , using controller medications on an as-needed basis is a common form of nonadherence.
Another example of a common misunderstanding that may influence medication adherence in asthma is the belief that, rather than being a chronic illness, asthma is something which is acute and episodic, exemplified by the phrase “no symptoms, no asthma” , or something that could be “outgrown” [14, 40, 45]. This belief tends to minimize the importance of controller medications to help prevent symptoms of asthma, which can then lead to reliance or overuse of reliever medication . For some, this was an intentional behavior, as one boy stated: “I’ll take it [medication] when I feel symptoms” . Yet, for others, symptoms served as a reminder to take medications, and therefore a lack of symptoms led to forgetting to take the medication .
An important component of adherence is not only taking the medication but taking it correctly . Incorrect use of medication can include taking it more or less often than prescribed, using doses different from what was prescribed, and, with asthma in particular, incorrect inhaler technique. Many adolescents with asthma struggle with incorrect inhaler technique [48, 49], which has been associated with higher rates of hospitalizations and lower rates of asthma control [49, 50]. While several interventions have been tested to improve asthma inhaler technique, it is currently unclear which approach is best, especially among adolescents . Regardless, clinicians should assess inhaler technique regularly and educate adolescents on the appropriate technique, along with the opportunity to practice in the office setting with a trainer device (or their own inhaler). Adolescents should be encouraged to communicate with their clinician if they are not confident or have questions regarding their inhaler technique .
Family has an important influence on adolescents’ medication taking behavior. This influence can either positively or negatively affect medication adherence. Parental illness beliefs were highlighted above as a potential factor influencing adolescents’ adherence [8, 9], but other factors can also affect adherence , such as parental beliefs about medications [53, 54].
Adolescence is a time of transition where the adolescent grows increasingly independent, including in the management of their health. However, adolescents often continue to rely on their parents for support in managing their health during this transition . While one study found no difference in adherence based upon level of family support , several studies have highlighted the importance parental support can play in promoting adherence. For example, adolescents often rely on their parents to remind them to take their medication [9, 12, 32, 35, 36, 55, 57, 58]. As one adolescent stated: “I take them by myself but my mom has to remind me otherwise I don’t do it” . For some adolescents these reminders were annoying but still useful: “… [My mother reminding me] gets annoying, but it helps because I don’t forget…” . This strategy, however, can also be counterproductive as the adolescent attempts to assert their independence. In a few studies, adolescents reported that they lied about medication use [32, 55]. Sometimes this is done out of laziness . As one adolescent stated: “Sometimes, most of the time my mum says, ‘have you took it’ and I just can’t be bothered to go and take it but I say I have so she don’t get worried, well I can’t really be bothered if I am walking to the kitchen, so I just tell her I have” . Other times, it is about asserting independence: “It’s rather annoying my mother asking me daily if I’ve taken my Flixotide. What’s that got to do with her? I don’t want get mixed up in her problems either. I’ll take it when I feel symptoms” .
As the adolescent transitions toward independence, more responsibility is placed upon them for managing their disease. During this transition, however, the management of the disease may suffer as tasks previously delegated to the parent are taken on by the adolescent [40, 59]. For example, monitoring the amount of medication and requesting a refill when necessary , or adhering to medication: “My mother used to be like you know you got to do your inhaler, use the machine before you go out and so she would prevent it from happening, but now I just wait for it to happen…” . During this transitionary period, care must be given to both support the adolescent and at the same time allow them to take on more responsibility. The amount of support given should be gauged on an individual level and based upon factors such as willingness to accept responsibility, maturity, and knowledge of asthma and asthma medications and not based upon age. Clinicians and parents should also recognize that the adolescent’s need for support may fluctuate based upon their situation, as well as over time. For example, during particularly busy or stressful times, or if the adolescent begins to suffer from anxiety or depression, additional support may need to be given to maintain adherence and disease control.
Like family, peers can also either have a positive or negative influence on adolescents’ adherence behavior. While peers can be supportive and promote adherence behavior [13, 33, 60, 61], they can also have the opposite effect . Additionally, perceived or actual stigmatization of the adolescent with an allergic disease by their peers may negatively affect adherence. Many adolescents desire to be viewed as “normal,” and having the allergic condition sets them apart, which can lead them to be labeled as “abnormal,” either by themselves or others [30, 34, 62]. In conditions such as asthma, use of medication in public may also set them apart. While not universal [14, 31, 33, 63], many adolescents with asthma report being embarrassed to take their inhalers in public, and as a result they either hide to take their medicine or avoid taking it in public altogether [13, 34, 58, 60, 64, 65, 66, 67]. As one adolescent stated: “It was very embarrassing for me to take my inhaler. People know about asthma, and yet they treat you weird. I used to hide myself taking my inhaler because I hated it when people looked at me. I felt offended, I felt ashamed” .
Side effects related to treatments for allergic diseases can negatively affect medication adherence. Inhaled corticosteroids, a common treatment for asthma, have been associated with a variety of side effects, including dysphonia (difficulty speaking), infection (especially oral infection such as oral candidiasis), cough, osteoporosis, cataracts, and impaired growth . Some adolescents may also experience weight gain if they require oral systemic corticosteroids [52, 64]. For some, side effects may be so bothersome or severe that they discontinue therapy [12, 32, 33, 59, 64, 66, 68]. As one adolescent stated: “When I’m reaping all the side effects and I was just thinking, you know, nuts to this, look at me I’m a mess and asthma is ok I’m just not gonna take them for a while to see what happens” .
The main treatment for the immediate relief of asthma symptoms, short-acting β-agonists, is also associated with side effects. The most common side effects include tremor and tachycardia . Adolescents sometimes also report anxiety or feeling “hyper,” which may contribute to nonadherence . In addition to the abovementioned side effects, some adolescents were concerned about becoming dependent or addicted to the medication [29, 33], while others complained that the inhalers have a bad taste and this contributed to their decisions to be nonadherent [29, 33, 46, 59, 63].
The treatments for allergic diseases can often be expensive. While many adolescents do not directly pay for their medications, they can be sensitive to the pressures that cost may place upon their family. This can sometimes lead to adolescents rationing their medication to avoid having to refill the medication as frequently [14, 58]. Other adolescents and their families can simply not afford the medication or face other barriers to accessing the medication (e.g., transportation) [14, 45, 66]. Clinicians should explore the extent to which cost is a concern for the adolescent and their family, and when possible, prescribe less expensive alternatives. In situations where this is not possible, focusing on non-pharmacologic approaches to manage the disease (e.g., breathing exercises in asthma), or connecting the adolescent and their family with resources which may help cover the cost of the prescriptions, may help to facilitate adherence.
Schedules and Routines
Adolescents often have busy schedules. Some adolescents can incorporate disease management into their routines, which facilitates adherence [12, 13, 63], while others cannot. Even among adolescents who incorporate disease management into their routines, when their routines get disrupted, nonadherence may result. For example, if the adolescent is running late for school, they may end up forgetting their medication in their haste to catch the bus, or prioritize getting to school over taking their medication, especially if it is perceived as being time consuming [14, 16, 32, 34, 46, 57, 60, 63]. As one adolescent stated: “Sometimes I forget… Because like when I’m getting ready for school, I have to try and get my breakfast and my stuff packed and my bag down by the door and get dressed and all that stuff, so I hardly have time for puffers” .
In qualitative studies of adolescents with asthma, several adolescents described situations where school policies were not conducive to adhering to their medications [59, 69, 70]. For example, adolescents may not be allowed to carry their medication with them and may have to either keep it in their locker or keep it stored in the nurse’s or administrator’s office. In these situations, adolescents may experience distressing symptoms without access to relief, as one adolescent recalled: “I was in PE and having trouble breathing and [the teacher] said ‘Well, we’re almost done so just wait a minute,’ and she wouldn’t let me go inside to get my inhaler” . Clinicians and parents should understand local school policies as it relates to medication to ensure that adolescents have timely access to medication to facilitate both optimal medication adherence as well as the least amount of symptoms or distress possible.
Nonadherence in adolescents with allergic diseases is not a simple behavior. There are many factors which contribute to nonadherence in the adolescent. Many times, nonadherence is unintentional, such as when the adolescent forgets to take the medication, which has a variety of causes, but could also be intentional due to factors such as dislike of medicine, not believing the disease is a threat, or not finding the medication to be effective. Understanding adolescents’ reasons for nonadherence, either intentional or unintentional, is a helpful first step to tailor strategies to help overcome barriers to adherence and facilitate integration of the treatment into the adolescent’s daily life.
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