The comprehensive system outlined here is offered as a model for providing inte- grated care around adherence promotion in a way that is resource savvy and sustain- able. Table 13.2 provides a summary of the key components and the domains they are intended to help address. More broadly, critical facets of the model are:
Its ability to make changes across multiple levels. Patients do not manage a chronic illness in a vacuum. Families, healthcare providers, and the healthcare system all play substantial roles in helping foster a patient’s treatment adherence.
Fostering changes at all of these levels simultaneously has the potential to affect adherence in ways that single-target interventions may not be able to accomplish.
Its ability to provide low intensity services to at-risk patients. Few interventions focus on the middle of the risk pyramid (Fig. 8), the at-risk patients who are not (yet) experiencing clinically-significant concerns. Preventing complications in this large group of children is a critical but overlooked priority.
Its focus on prevention. Interventions focused on preventing or reducing acute life-threatening complications of nonadherence can have a greater impact on chil- dren’s health than attempts to intervene after problems have occurred. Medical cri- ses and related hospitalizations account for the lion’s share of morbidity, mortality, and cost in patients with chronic illness. In addition, the preventive approach taken here helps “set the stage” for better long-term illness control, as adherence behav- iors are known to be established in the first years following diagnosis, and good adherence early on can have a protective effect against later complications.
Its reach. The Catch-22 of adherence promotion is that the patients and families most in need of support often do not seek out or receive effective interventions. By using up-to-date technologies (internet, mobile apps) that have a high acceptability and uptake among pediatric populations, and linking this system to personal care, the methodology has the potential to reach many patients who otherwise might have
“fallen through the cracks.”
Its use of personal contact. Using a web-based system risks making intervention seem faceless and impersonal (and we doubt that this problem is solved by giving patients virtual “avatars,” which is the approach used by some pharmaceutical com- panies on their websites). Linking the services with personal contact and personal-
ized care can help improve utilization of healthcare services and behavioral health interventions, thus further optimizing the system and its ability to have positive effects on a patient’s life.
The behavioral health model proposed here represents an innovative attempt to address the widespread problem of suboptimal adherence proactively. By address- ing multiple factors that support adherence more or less simultaneously, we believe this sort of integrated system has a better chance of effecting changes in overall adherence rates. A corollary of this approach is that takes as a basic assumption that illness management results from the efforts of multiple actors operating within multiple contexts, and that communication is a key to coordinating these efforts and fostering effective teamwork.
Table 13.2 Summary of the suggested components for a behavioral health system. Web-based interventions could also be made accessible through a linked mobile phone app
Domain Intervention Format Level
Knowledge Educational patient materials Website Universal
Behavioral control Management tools Website Universal
Social support/
social norms Web-based social community (moni- tored chat rooms, bulletin boards, or forums)
Website Universal
Patient videos/stories
Communication Email, text messaging, chat Website Universal and Targeted (at-risk) Link to patient’s EMR
Appointment reminders Connection with
healthcare team Support for navigating healthcare
system Website care
ambassador Targeted (at-risk) Personal appointment reminders
Resources Social work support Social work Targeted
Emotional support Educational materials Website Universal
Stress management modules Patient videos/stories
User-defined check-ins via email, text,
or chat Adherence expert Targeted
(at-risk) Family support Educational modules on family
teamwork Website Universal
Family problem-solving tool
E-Health family intervention Targeted
(at-risk) Significant child or
family dysfunction Behavioral/cognitive-behavioral
therapy Psychology/
behavioral health Clinical
Behavioral family therapy Website N/A
Provider behavior Patient materials CME modules
174 13 A Comprehensive Behavioral Health System for Identifying and Treating…
The initial development of this sort of integrated system is likely to be somewhat costly and resource-intensive, and maintaining it will also not be resource-free, especially if (as we recommend) it incorporates personnel such as Care Ambassa- dors and an adherence expert, and is kept up-to-date to reflect increasing knowledge and changes in the field. Demonstrating its cost effectiveness, perhaps primarily by reducing incidence of acute medical crises requiring hospitalization, will therefore be critical, as will demonstrating its clinical effectiveness through rigorous empiri- cal investigations. Nonetheless, the hope is that this sort of model main gain trac- tion in the new healthcare environment, in which there will be greater incentives to promote adherence and demonstrate positive health outcomes (Stark 2013).
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