Inflammatory bowel disease (IBD), comprised of Crohn’s disease and ulcerative colitis, is diagnosed in approximately 71 of 100,000 individuals in the United States (Kappelman et al., 2007
) and approximately one-quarter of patients are diagnosed during childhood or adolescence. Disease features of IBD include chronic, intermittent inflammation of the gut; diarrhea; abdominal pain; and growth failure. Treatment of IBD primarily involves the use of oral medications, which may vary in dosing frequency and number of pills to be taken by patients per dose. This, combined with negative side effects (e.g., weight gain) of adjunctive medications such as prednisone and an unpredictable disease course, presents significant self-management challenges to children and their families.
Treatment adherence is a significant health concern in pediatric chronic illness management, with 50–75% of children and adolescents not adhering adequately to their prescribed regimens (Logan, Zelikovsky, Labay, & Spergel, 2003
; Rapoff, 1999
). Data on adherence in the pediatric IBD population is limited but consistent with other pediatric populations, with nonadherence prevalence ranging from 50% to 88% depending on the medication and method of assessment (Hommel, Davis, & Baldassano, 2008, 2009; Mackner & Crandall, 2005b
; Oliva-Hemker, Abadom, Cuffari, & Thompson, 2007
; Riekert & Drotar, 2002
). While these data clearly demonstrate that adherence is a significant challenge for children and adolescents with IBD, it does not provide insight into the particular barriers that might prevent patients and families from taking their medication as prescribed.
Barriers to treatment adherence have been examined in several pediatric populations. Much of this research has identified similar barriers including forgetting, taste/palatability issues, oppositional behavior, side effects, time constraints, failure to refill prescriptions, organizational difficulties, and interference with other activities in populations such as cystic fibrosis and asthma (Modi & Quittner, 2006
), sickle cell disease (Witherspoon & Drotar, 2006
), and transplant recipients (Simons & Blount, 2007
). Moreover, there is evidence that increased number of barriers is related to poorer adherence (Logan et al., 2003
; Riekert & Drotar, 2002
). A recent study in IBD reported that forgetting, being away from home, and interference with activities were the most common barriers to adherence, and that greater number of barriers were correlated with poorer self-reported adherence (Ingerski, Baldassano, Denson, & Hommel, 2009
). However, this study relied exclusively on forced-choice quantitative data, and the self-reported adherence estimates were likely overestimated by participants (Ingerski et al., 2009
). Reliance on forced choice measures alone, which is common in adherence research, may result in some barriers being missed if they were not included in the questionnaire. Moreover, the use of both deductive and inductive methodologies provides a complementary focus on a specific behavioral process such as treatment adherence, and may enhance data accuracy as a result.
At this early stage of adherence research in IBD, it is important to get both quantitative and qualitative data regarding barriers to treatment adherence so that the development of interventions can consider all possible factors and target the most salient barriers contributing to poor adherence. Thus, the primary objective of this study was to examine patient- and parent-reported barriers to treatment adherence in IBD using a quantitative forced-choice questionnaire as well as a qualitative open-ended interview assessment in order to obtain comprehensive data on barriers in this population. A secondary objective was to examine the relationship between the number of perceived barriers and nonadherence. Consistent with prior research, it was anticipated that greater number of perceived barriers would be positively correlated with nonadherence.