Rachelle R. Ramsey, Nanhua Zhang, Avani C. Modi. The Stability and Influence of Barriers to
Medication Adherence on Seizure Outcomes and Adherence in Children With
Epilepsy Over 2 Years. J Pediatr
Psychol. 2018;43(2):122-132.
Abstract
Objective To determine the stability and influence of
adherence barriers on medication adherence and seizure control in pediatric
epilepsy.
Methods Caregivers of 118 children aged 2–12 years old with
epilepsy completed the Pediatric Epilepsy Medication Self-Management
Questionnaire at nine time points over 2 years post diagnosis. Electronically
monitored antiepileptic drug adherence and seizure outcome data were collected.
Results Hierarchical linear modeling results for overall
barriers remained stable over 2 years. Specific item-level barriers were also
generally stable over time, with the exception of running out of medication
becoming more of a barrier over time. No specific barriers were related to
seizure control; however, difficulties swallowing medication, forgetting, and
medication refusal were related to electronically monitored adherence over
time.
Conclusions Assessing for specific adherence barriers over
time may lead to identification of interventions that result in improved
adherence and care.
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From the article
The current study highlights the importance of assessing
treatment adherence barriers in children with epilepsy to promote AED adherence
and optimal seizure treatment. For families of children with epilepsy, the
overall number of barriers and nearly all of the specific barriers (e.g.,
forgetting, disliking taste) remain stable during the initial 2 years of a
child's epilepsy diagnosis. One barrier, running out of medication, became more
of a barrier to AED adherence over time. From a clinical standpoint, this
suggests that barriers experienced by patients and caregivers following
diagnosis are likely to persist or worsen over the initial 24 month period
following diagnosis. It seems reasonable to believe that these barriers would
remain stable or worsen without appropriate identification of these barriers
and interventions to mitigate these barriers. If barriers remain consistent,
AED adherence will likely not improve. These findings are similar to studies of
adherence barriers in children taking immunosuppressant drugs following
transplant. Obtaining information about the specific barriers that are present
for children with epilepsy and their families will help clinicians to identify
children in need of interventions aimed at improving adherence select
appropriate interventions, and provide resources that will be helpful to the
family. Similar to studies of adherence barriers in other illness groups,
forgetting to give medication and disliking the taste of the medication were
the most common adherence barriers reported during the initial 25 months
following an epilepsy diagnosis.
One major strength of the current study is that we were able
to examine the interaction between time and adherence barriers on two different
outcome variables: electronically monitored adherence and seizure control.
Although none of the time-by-barrier interactions predicted seizure control,
several of the time-by-barrier interactions were related to electronically
monitored adherence over time: child difficulty swallowing medication,
forgetting to give medications, and child refusing to take the medication. These barriers appear to be critical agents
for change in adherence promotion efforts in the future. It should be noted
that although barriers remained stable over time, adherence decreased
substantially over time. Declining adherence over time is consistent with the
larger adherence literature; however, our study
findings suggest that other factors, such as SES, family involvement, and child
behavioral/emotional disorders, may contribute to nonadherence above and beyond
adherence barriers measured in this study.
The lack of seizure control findings may also be because of other salient
factors that contribute to seizure control beyond adherence and adherence
barriers, including biology (e.g., type of seizure, medication, and seizure
combination), SES, or a host of other factors .
Results demonstrate that shortly following diagnosis,
adherence did not vary based on the reported level of difficulty swallowing
medication; however, increased difficulty swallowing the medication and
adherence were related at 25 months post diagnosis, such that more difficulty
swallowing the medication was related to lower adherence. It should be noted
that at 1 month post diagnosis adherence was high across all levels of reported
barriers with regard to difficulty swallowing. In other words, although some
children with epilepsy reported having difficulty swallowing their AED
medication, children with all levels of swallowing difficulty maintained, on
average, a high level of adherence (>84.17%) during the first month of a
child's epilepsy. The relationship between higher levels of difficulty
swallowing and poorer adherence, however, becomes more exaggerated over time
such that by the end of 25 months, children who report the more difficulty
swallowing had, on average, 38.81% adherence, while children with no difficulty
swallowing difficulties had 60.36% adherence. Although speculative, perhaps
early in the child's diagnosis, parents are more vigilant about ensuring that
the child is adherent to the AED despite swallowing barriers or they quickly
identify and implement solutions that are beneficial (e.g., pill glide or
coating the capsules or switching to liquid AEDs). With time, however, this
vigilance may decrease, previously used solutions may be less effective or less
frequently used, and simultaneously a new normal related to seizure activity
(seizure free vs. continued seizures) is developing. The combination of these
factors, along with the frustration and conflict that may arise from swallowing
problems and medication refusal, may lead to AED nonadherence as an avoidance
coping strategy. Alternatively, parents may attempt to give AEDs (despite
swallowing difficulties) more consistently following diagnosis and may open the
bottle less often months into the diagnosis because of frustration of trying to
make the child swallow their AEDs. In this case, the barrier of swallowing is
still present; however, attempting to overcome the barrier may be absent. Given
the relationship between difficulty swallowing medication and rates of
adherence over time, providers should assess and provide interventions for this
particular barrier at diagnosis and throughout treatment. In fact, pill
swallowing can be effectively taught to even young children.
The adherence barrier "child refusal to take AEDs"
by time interaction was significant in predicting adherence resulting in a
positive relationship at 1 month post diagnosis and a negative relationship at
25 months post diagnosis. The relationship between increased refusal of taking
AEDs and poorer adherence at 25 months was expected; however, the relationship
between increased refusal and increased adherence at 1 month post diagnosis was
surprising. Both difficulty swallowing and child refusing medication are
ingestion barriers that fall under the broad category of Health and Illness
barriers. As such, they are
categorically different from the typical barriers of forgetting,
organizational, or financial cost types of adherence barriers. In the case of
ingestion-related barriers, families are often hyperaware of the barriers,
eager to discuss these difficulties, and actively working to fix these barriers
to improve adherence. For example, it may be that early in treatment, parents
are acknowledging barriers, such as medication refusal and difficulty
swallowing, even if the child eventually winds up taking the AED, and therefore
AED adherence is high. This may be in direct contrast to other barriers such as
forgetting or financial barriers, which often results in a missed AED dose. As
mentioned, the identification of ingestion-related barriers are amenable to intervention
with the use of pill swallowing (Patel et al., 2015) or behavior management
techniques. Given our results, it is important that providers continue to
assess barriers over time and understand that barriers may impact adherence differentially
over the disease course.
Finally, regarding the barrier of forgetting to give
medication, the main effect of time indicated that overall adherence is higher
at 1 month post diagnosis compared with 25 months post diagnosis across the
range of forgetting difficulties. For the interaction of time and forgetting,
increased AED forgetting was related to poorer adherence 1 month following
diagnosis and improved adherence 25 months later. This time by barrier
interaction was in the expected direction at 1 month post diagnosis as
increased forgetting to give/take AEDs resulted in poorer electronically
monitored adherence. However, the finding at 25 months post diagnosis is
unexpected. Specifically, results revealed higher adherence for those individuals
endorsing forgetting as a barrier. There are several plausible explanations.
First, social desirability may play a large role in whether parents endorse
forgetting as an adherence barrier. Acknowledging that you sometimes or often
forget to give your child his/her AED for epilepsy places the responsibility
for the child's adherence and condition status on the parent. Perhaps when
adherence is high across the board (shortly following AED initiation and early
in treatment), the influence of social desirability reporting is less evident,
but as adherence decreases, it becomes clearer. Alternatively, it may be that
parents become less aware of how often they forget to give AEDs because
forgetting has become more routinized. It is also important for clinicians to
consider whether it is likely that any child "never" forgets to take
their AEDs. One additional consideration regarding forgetting, which was not
assessed in this study, is purposeful forgetting or volitional nonadherence. It
is possible that "purposefully forgetting" is because of side effects
or beliefs regarding the efficacy of the medication. Barriers such as
forgetting are amenable to organization-focused strategies, including reminders
via technology (e.g., cell phone reminders and text messaging services) or
incorporating AEDs into daily routines (e.g., pairing with brushing teeth and
use of pillbox.
The findings from the current study should be considered in
the context of several limitations. First, children age 2–12 years participated
in this study, and results are not generalizable to adolescents with epilepsy.
In addition, parents provided information regarding adherence barriers because
of the young age of the participants. A larger developmental range and child
assessment of adherence barriers should be included in future studies given
that adolescents with epilepsy may have their own unique perspective on how
adherence barriers interfere with their treatment regimen. Second, there was attrition
across the course of this 2-year longitudinal study, which further limits the
generalizability of the results. Third, adherence was assessed by MEMS Caps and
nonmonitored periods, as reported by families, were not included in the
adherence calculation. Although use of the MEMS TrackCaps can only confirm when
the bottle was opened and not actual ingestion, this method is still considered
the gold standard of adherence assessment. Also, it is possible that medication
refills were not always placed in the MEMS bottle and that nonmonitored periods
occurred during times of nonadherence, artificially inflating the adherence
rate. It should be noted, however, the exact dates of the nonmonitored periods were
reported to study staff during the study visit, with no information regarding
their actual adherence data. Finally, data collection occurred at one site, and
future studies should include a larger sample size across multiple sites to
further examine the stability of overall barriers over time.
Overall, this study contributes to the literature by
addressing the important question of the stability and influence of adherence
barriers on AED medication adherence and seizure control for children with
epilepsy over the 25-month disease course. The overall barriers experienced by
families of children with epilepsy were stable, while the specific barriers
were stable or worsened over time. The specific barriers including difficulties
swallowing medication, medication refusal, and forgetting, were related to
adherence over time; however, the relationship between these barriers and AED
adherence changed over time. Assessing patients' specific barriers at diagnosis
and throughout epilepsy treatment will allow for the selection of the most
appropriate interventions to improve clinical care and outcomes.
Courtesy of: https://www.medscape.com/viewarticle/893507_1
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