In the United States, poor adherence accounts for up to 70% of all medication-related
hospital admissions, resulting in $100 billion in healthcare costs annually Adherence rates
have been reported as low as 0% in pediatric patients. Reasons for non-adherence are
multifactorial. The most important determinants of non-adherence are consistently documented
as complexity and duration of treatment regimens, as well as forgetfulness. Thus, children
undergoing difficult hematopoietic stem cell transplants (HSCT) that require medication
indefinitely are at high risk for medication non-adherence.
Only 4 published studies exist regarding adherence in pediatric HSCT. None address adherence
to immunosuppressant medication, nor are they RCTs. Second, the complexity of most
interventions for adherence is counter to the geographic, resource, and time constraints
families of chronically ill children face. Adherence interventions based on conventional
behavior theory have been cumbersome for families already stressed due to chronic illness. BE
design is a significant paradigm shift to a simpler, less onerous approach that can engage
those patients and families that would otherwise forego complicated adherence interventions.
Although mHealth adherence apps are a widely available, simple, and innovative approach to
addressing these problems, a third gap relates to poor usability. For example, a recent
review of pediatric adherence apps found that none identified individual barriers to
adherence, and nearly all were designed for adults. Thus, there is an urgent need to develop
and evaluate innovative, accessible, and evidence-based approached to adherence among
children receiving HSCT to prevent morbidity and mortality from GVHD.
The impact of non-adherence on clinical outcomes is largely unknown in pediatric HSCT. poor
adherence is generally associated with adverse outcomes, including complications, hospital
admissions, and even death. The societal burden of cancer care and HSCT is substantial and
likely to increase based on the growing number of transplants each year. Clinicians and
researchers have focused on GVHD prevention to minimize unnecessary treatment-related deaths.
Acute GVHD develops in the first 100 days post-transplant. Children that develop acute GVHD
have a 30% to 50% chance of survival. Morbidity and mortality due to GVHD can be decreased
through prophylactic use of immunosuppressants. Although these medications are costly and
produce unpleasant side effects, adherence is critical to decrease complications, reduce
readmissions, and ultimately increase quality of life and survival.
Adherence is complex, but ultimately, the final common pathway to adherence is human
behavior. In pediatrics, adherence is largely dependent on parents. As the primary
caregivers, they are responsible for ensuring children receive the prescribed therapy
correctly. In a high-risk HSCT population, caregivers are isolated with their child due to
infection risk and must manage challenging treatment regimens at home, often with limited
time and support. Complex behavioral interventions, typically employed to address adherence,
are difficult to deliver and manage in the context of these daily tasks. Alternatively,
behavioral economics (BE) theory suggests that small "nudges" can produce and sustain
behavior change. A BE approach is a significant paradigm shift and assumes decision-making
can be influenced through low-intensity interventions to lead patients to optimal choices.
Improved adherence to medication and exercise programs using BE designed interventions in
adults have been positive. Within pediatrics, BE has been successful in reducing childhood
obesity, increasing vaccination rates, and improving adherence rates to infant HIV
medications.