The current study is the first and only known report of the negative additive impact of anxiety/depressive symptoms on the relationship between barriers to adherence and adherence among adolescents with IBD. Although prior research has linked poorer adherence with increased barriers to adherence, our study is the first to demonstrate that the extent to which this relationship occurs is affected by the presence of anxiety/depressive symptoms. Thus, our findings suggest that anxiety/depressive symptoms may be a critical risk factor in adherence among youth with IBD. Improved understanding of this risk factor may play a vital role in the design of timely, effective adherence interventions. Ultimately, helping adolescents establish positive health management behaviors may help prevent nonadherence and its associated medical and financial consequences in adulthood.
Results indicate that barriers to adherence are normative, rather than the exception, among youth with IBD (barriers endorsed by 96.2% of sample). Additionally, the reasons why adolescents do not take their medication vary greatly. In our study sample, forgetting, being away from home, and treatment interfering with an activity were the most commonly reported barriers to adherence. These barriers in particular illustrate the many difficulties adolescents experience when attempting to manage their IBD treatment in the context of their busy everyday lives. However, when working with adolescents to reduce barriers to adherence, it is important not to assume a one-size-fits-all approach as the underlying causes of the most commonly endorsed barriers may vary greatly and thus require different intervention approaches. For example, when dealing with the barrier of “forgetting,” it is important to determine what factors cause the adolescent to forget to take their medicine. If poor planning and organization are the underlying cause, working with the adolescent to better integrate their medications into their normal routine may be helpful. Other adolescents, who forget to take their medicine when away from home, may benefit most from reminder tools (e.g., cell phone alarm, reminder text messages). However, either of these two approaches would likely be unsuccessful when working with an adolescent whose primary contributors to forgetting are a lack of parental support/monitoring or low motivation to adhere to treatment. In many cases, addressing barriers to adherence is not a straightforward process and in depth problem solving, planning, and support from family, friends, and medical providers is often needed to promote change. Thus, adolescent report of barriers should primarily be considered a starting point in an attempt to understand the complex manner in which barriers negatively impact adherence.
In order to overcome barriers to adherence, it is important to first recognize when problems with adherence occur. Although adolescents generally assume greater treatment responsibility over time, it is essential that parents continue to play an active role in their adolescent's care by monitoring their adherence (Shaw, 2001
). This can be done overtly (e.g., checking in with adolescent to see if dose was taken) or covertly (e.g., checking pill box, counting pills). Ideally, the method of monitoring should be a shared decision between the adolescent and their parent to minimize the potential for declines in adherence due to parent-teen conflict (Hauser et al., 1990
). Regardless of the method used, monitoring of adherence is essential in first identifying barriers to adherence, then taking steps to address them.
However, addressing barriers to adherence may be more challenging among adolescents with poorer emotional functioning. The current study is the first and only report of higher anxiety/depressive symptoms having an additive effect on the barriers–adherence relationship. Among adolescents with lower anxiety/depressive symptoms, increasing barriers did not significantly impact adherence. However, among those with high anxiety/depressive symptoms, adherence was significantly lower (12.6 percentage points) than those with fewer barriers, suggesting that the presence of anxiety/depressive symptoms amplifies the negative impact of barriers on adherence in youth with IBD.
Barriers to adherence and anxiety/depressive symptoms may combine to impact adherence in several ways. The presence of problematic emotional functioning may undermine adolescents’ ability to recognize declines in adherence, identify barriers, and actively take steps to overcome them. Adolescents with poorer emotional functioning may also struggle with soliciting needed support from family and friends to maintain good adherence. Additionally, those with emotional problems may mistakenly interpret the physiological symptoms of anxiety (e.g., nausea, abdominal distress) and depression (e.g., fatigue) as symptoms of IBD, erroneously conclude that treatment is not working (treatment efficacy barrier), and stop taking their medication. Such health beliefs have been consistently linked with poorer adherence (Brownlee-Duffeck et al., 1987
; Bucks et al., 2009
; Janz & Becker, 1984
The detrimental combined impact of barriers to adherence and emotional functioning symptoms on adherence suggests that solely assessing for barriers to adherence among adolescents with IBD is inadequate. In order to optimize improvements in adherence, clinicians must routinely screen for barriers to adherence and symptoms of anxiety and depression. This can easily be done by administering brief, well-validated screeners of anxiety (e.g., Beck Anxiety Inventory [BAI]; Beck & Steer, 1990
), depression (e.g., Center for Epidemiological Studies Depression for Children [CES-DC]; Weissman, Orvaschel, & Padian, 1980
), and barriers to adherence (e.g., barriers module of Medication Adherence Measure; Zelikovsky & Schast, 2008
) during clinic visits and using patient responses on these measures to guide discussion of factors impacting their health and their medical care. Adolescents endorsing clinically elevated levels of anxiety or depression should be referred to a psychologist or other mental health professional for additional care.
Findings from the current study should be considered in the context of its strengths and limitations. The current study moves the pediatric IBD literature forward in several ways. First, this is one of the few known studies to examine multiple factors impacting adherence through the use of predictive, rather than descriptive, statistical analyses. Another strength is the use of multi-site data collection, which allowed for the recruitment of a sample larger than typically included in pediatric IBD research. The use of a well-validated, norm-referenced measure of anxiety/depressive symptoms and the assessment of barriers to adherence and adherence as it is typically done in clinical practice are additional strengths. Limitations of the current study include the cross-sectional nature of data, a relatively homogeneous sample of youth with IBD, the use of self-report to assess adherence, and high self-report of adherence. Although our sample was relatively homogeneous, it is demographically similar to samples previously reported in pediatric IBD studies (Mackner & Crandall, 2007
). Self-report, the most commonly used method to measure adherence, has a tendency to overestimate adherence compared to more objective measures such as pill counts, electronic monitoring, or blood assays (Hommel et al., 2009
; La Greca, 1995
). However, this approach was used for two reasons. Compared to these more objective approaches, which may not be feasible due to time and budgetary constraints, our assessment approach is consistent with what is typically done in clinical practice and is therefore more generalizable. Second, compared to our global assessment approach, objective approaches are less able to capture the multifaceted nature of adherence. Blood assay data, which were available for some participants, were not used for this reason as these data are easily influenced by recent adherence and, as they are medication-specific, do not capture overall adherence. Recent research suggests that adopting a more global approach to adherence assessment is more predictive of actual adherence behaviors than more specific approaches such as asking patients to report the number of pills missed over the past week (Greenley et al., in press). High self-report of adherence is another limitation as this restriction of range may have deflated our correlation coefficients. Given this, it is possible that the combined impact of barriers to adherence and poorer emotional functioning on adherence has been underestimated in our study.
Additional adherence research is needed among adolescents with IBD. Specifically, prospective studies examining the dynamic, interactive relationship between barriers to adherence, emotional functioning, and adherence are needed. Such research would greatly inform the design of effective, well-timed interventions among youth with IBD and would aid in clinical decision making when problems with adherence or anxiety/depressive symptoms become known. Research examining the role of parental monitoring on adherence is also needed as there is little guidance on the optimal type or amount of parental involvement to protect against declines in adherence among adolescents with IBD. Additionally, adolescent beliefs regarding treatment efficacy and the benefits and consequences of nonadherence should be examined as improved understanding of the adolescent's perspective can inform the approach clinicians and parents take to effectively engage the adolescent in a collaborative discussion of problems with adherence.
Although nonadherence is linked with poor health outcome and increased health expenditures among adults with IBD, little is known regarding the consequences of nonadherence to the IBD regimen among pediatric populations. Our cross-sectional data suggest a relationship between adherence and disease activity. However, longitudinal assessment is critically needed to determine the extent to which adherence affects health outcome. Due to our limited knowledge of this issue, it is currently unknown what constitutes a clinically significant increase in adherence or to what extent a minimum adherence threshold exists. Thus, it is difficult to determine the extent to which a 12.6% difference in adherence found among adolescents with high or low barriers to adherence and high anxiety/depressive symptoms corresponds to long term differences in health outcome. These are a critical gaps in the literature that need to be addressed as the pharmacokinetics of IBD medications in children may vary significantly from adults due to children's continuous state of physiological development (Rylance, 1981).
Ultimately, the current study is an important first step toward our understanding of additional factors that negatively impact adherence among adolescents with IBD. Our findings suggest that anxiety/depressive symptoms play a critical role in whether or not barriers to adherence will impact adherence and findings may guide the development of risk profiles to help identify and preventatively intervene with patients at risk for problematic adherence. Continued research in this area would greatly move the pediatric IBD literature closer to providing optimal disease management support for adolescents with IBD.