While still a relatively new area of study, a large body of literature has recently developed documenting rates of adherence to medical regimens across pediatric populations. Reviews suggest adherence rates range from 50% to 55% across various pediatric chronic illness groups (Rapoff, 1999
; Rapoff & Barnard, 1991
). Interestingly, disease self-management is a particular problem during adolescence, when adherence to treatment regimens often declines (Smith & Shuchman, 2005
). Of note, developmental demands during this period (e.g., decline in parental supervision, peer influences, and increase in automony) likely contribute to higher rates of adherence-related difficulties (Anderson, Ho, Brackett, Finkelstein, & Laffel, 1997
; Butner et al., 2009
; Stewart & Dearmun, 2001
). Understanding how youth and families follow prescribed regimens during adolescence has significant implications for both treatment effectiveness and long-term health outcomes (Fotheringham & Sawyer, 1995
; Higgins, Rubin, Kaulback, Schoenfield, & Kane, 2009
; Osterberg & Blaschke, 2005
; Smith & Shuchman, 2005
Adherence is especially important for youth diagnosed with Crohn's disease and ulcerative colitis (UC), collectively referred to as inflammatory bowel disease (IBD), where even lower rates of adherence have been documented. Affecting approximately 71 of every 100,000 youth (Kappelman et al., 2007
), IBD is a chronic disease characterized by intermittent inflammation of the gastrointestinal tract. Previous research describes rates of nonadherence ranging from 50% to 88% (Hommel, Mackner, Denson, & Crandall, 2008
; Mackner & Crandall, 2005
; Oliva-Hemker, Abadom, Cuffari, & Thompson, 2007
). The unpredictable nature of IBD treatment, disease severity, side-effects and symptoms, and prognosis likely impact youth's overall behavioral functioning (Mackner, Crandall, & Szigethy, 2006
). In addition, while no data are currently available in the pediatric population, research suggests that non-adherent adults diagnosed with IBD are 5.5 times more likely to experience relapse (Kane, Huo, Aikens, & Hanauer, 2003
) and have 12.5% higher annual healthcare costs (Higgins et al., 2009
) compared to adherent patients. Taken together, the documented rates of nonadherence, unpredictable nature of the disease, and significant health risks and costs associated with nonadherence in IBD suggest that greater understanding of adherence in this population is a critical need.
While a number of models to understand nonadherent behavior have been proposed, the health belief model has gained increasing support in pediatric populations (Bush & Iannotti, 1990
). This model posits that an individual's perceived risk, consequences, benefits, barriers, and cues each impact adherence-related behaviors. Thus, one of the key components in planning effective interventions to improve treatment adherence is appropriately addressing perceived barriers to treatment regimens (Lemanek, Kamps, & Chung, 2001
). While previous research suggests that behavioral and multi-component interventions are often effective in improving adherence-related behaviors (Drotar, 2000
; Kahana, Drotar, & Frazier, 2008
), understanding the key barriers to treatment recommendations is a critical step in planning and implementing such interventions and, perhaps, preventing nonadherence relapse.
Research in other pediatric populations provides preliminary information regarding possible barriers to adherence in pediatric chronic illness. For example, forgetting (Burgess, Sly, Morawska, & Devadason, 2008
; Marhefka et al., 2008
; Modi et al., 2009
; Modi & Quittner, 2006
; Zelikovsky, Schast, Palmer, & Meyers, 2008
) is a frequently cited barrier across pediatric asthma, cystic fibrosis (CF), human immunodeficiency virus (HIV), sickle cell disease (SCD), and kidney transplant; however, specific barriers often vary depending on the population studied. Multiple barriers are often reported by patients across populations, where the higher number of reported barriers is related to greater difficulty adhering to medical regimens (Marhefka et al., 2008
; Modi & Quittner, 2006
). Unfortunately, no studies are currently available that document specific barriers within the pediatric IBD population or the relationship between such barriers and treatment adherence. Given its implications for effectively tailoring adherence-related interventions in this population, understanding the specific barriers to treatment adherence in IBD is needed.
The current study documented family-reported barriers to medication adherence and examined their relationship with adolescents’ medication adherence. It was hypothesized that fewer reported barriers would be related to better medication-related adherence as measured by self-report, pill count, and serum assay.