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Measuring medication adherence in pediatric inflammatory bowel diseases (IBD) is challenging because of complexities in personalized treatment regimens and increased use of biologic mono- and combination therapy. Objective measurement of adherence via electronic monitoring is the gold standard; however, it is not useful for daily monitoring when multiple medication formulations (eg, pills, injections, infusions) as well as vitamins/supplements are prescribed. Although validated subjective measures are available, they are not designed for daily use and do not capture day-to-day variation in adherence. In the following article, a new approach to measuring adherence regardless of a patient’s specific medication regimen is presented. Utilizing a micro-longitudinal design, 30 days of daily self-reported medication adherence data was collected from youth with IBD via text message. Results reflect mean adherence rates from studies utilizing pill counts and electronic monitoring, suggesting promise for the use of self-reported daily diaries to assess medication adherence in pediatric IBD.

OBJECTIVES: Among adolescents with inflammatory bowel disease (IBD), nonadherence rates are 50 to 88% across medications. Improving education in adults with IBD has been shown to improve coping and adherence to treatment in adults with IBD. Therapeutic patient education (TPE) has been used in patients with chronic diseases to train patients in skills to support treatment adaptation and condition management. This study tested the feasibility and preliminary efficacy of a novel TPE intervention in adolescents with IBD. METHODS: In this pilot, mixed-methods study, we evaluated the feasibility and preliminary efficacy of TPE with the IBD Pocket Guide on medication adherence, IBD knowledge, and transition readiness in adolescents ages 11 to 18 years. Medication adherence was monitored using a MedMinder Pill Dispensing system. Participants who were

Health-related quality of life (HRQOL) is an important, but understudied construct in pediatric inflammatory bowel disease. Family level predictors of HRQOL have been understudied as are the mechanisms through which disease activity affects HRQOL. The present study examines the relation between a family level factor (parenting stress) and HRQOL in youth with Crohn disease. Parenting stress is examined as a mechanism through which disease activity affects HRQOL.A total of 99 adolescents with Crohn disease and their parents were recruited across 3 sites. Adolescents completed the IMPACT-III (inflammatory bowel disease-specific HRQOL). Parents completed the Pediatric Inventory for Parents, a measure of medically related parenting stress that assesses stress because of the occurrence of medical stressors and stress because of the perceived difficulty of stressors. Disease activity was obtained from medical records.Parenting stress because of the occurrence of medical stressors partially mediated the disease severity-HRQOL relation, reducing the relation between these variables from 49.67% to 31.58% (B= -0.56, P0.0001). Bootstrapping analysis confirmed that the indirect effect of disease severity on HRQOL via parenting stress significantly differed from zero. Parenting stress because of the perceived difficulty of medical stressors partially mediated the disease severity-HRQOL relation, reducing the relation from 49.67% to 30.29% (B= -0.55, P0.0001). The indirect effect was confirmed via bootstrapping procedures.As disease severity increased, parenting stress also increased, and adolescent HRQOL decreased. Parenting stress should be considered and assessed for along with medical factors as part of a comprehensive approach to improve HRQOL in adolescents with Crohn disease.

Inflammatory bowel disease (IBD) is a chronic condition that is characterized by an intermittent and unpredictable disease course and a heterogeneous constellation of symptoms that includes abdominal pain, recurrent diarrhea, growth delay, and perianal disease 1. Unfortunately, psychosocial distress is also common among youth with IBD and their families. Youth with IBD experience high rates of psychological maladjustment (60%)2; 3 including depression (18-25%)4-6 and anxiety disorders (28%)7. Rates of parental psychological distress and greater family dysfunction are higher in families of youth with IBD when compared to healthy controls7; 8 and have been associated with significant medical and emotional outcomes of youth with IBD (i.e., increased functional disability, depressive symptoms, and frequency of bowel movements8-10). Thus, the high rates of psychological distress and family dysfunction are serious clinical concerns and have profound implications for the long-term psychological and physical well-being of these youth. As such, there is a critical need for routine screening, assessment and management of the psychosocial needs of pediatric IBD patients and their families. Unfortunately, most IBD clinics have limited resources to implement comprehensive psychosocial screening programs. Therefore, the first step to providing more consistent and comprehensive evidence-based psychosocial care to youth with IBD is the development of a validated, standardized screening instrument that can efficiently and effectively assess the psychosocial risk of youth with IBD and their families in the context of clinical practice. The Psychosocial Assessment Tool 2.0_General (PAT2.0_GEN;11-13), completed by the patient’s caregiver (i.e., parent or legal guardian), is one such brief standardized screening instrument of psychosocial risk. It screens a broad range of patient and family needs that includes everything from financial resources to behavioral concerns. The majority of existing measures do not screen for the structural, financial, and family issues that may impact behavioral, emotional and health outcomes of the patient. The availability of an assessment tool like the PAT2.0_GEN could facilitate the identification of youth with IBD in need of psychosocial services and for whom the promotion of psychosocial functioning is crucial for optimizing medical outcomes. The PAT2.0_Gen scores can be used to categorize patients and families into the Pediatric Psychosocial Preventative Health Model (PPPHM). The PPPHM is a parsimonious, yet comprehensive approach to conceptualizing psychosocial risk1 in pediatric populations. The PPPHM is depicted as a pyramid with three horizontally oriented risk categories: Universal (base of the pyramid), Targeted (middle of pyramid) and Clinical (apex of the pyramid)14; 15. Please see Figure 1. The level of risk for experiencing difficulties either in managing a pediatric chronic illness or other life demands is lowest in the Universal category and highest in the Clinical category. Previous studies have found the majority of families fall into the Universal risk category (55-67%), fewer score in the Targeted category (32%) and the fewest number score in the Clinical risk category (1-13%)13. Figure 1 The Pediatric Psychology Preventative Health Model Therefore, the availability of a valid psychosocial risk screening tool such as the PAT2.0_GEN could increase the feasibility of regular monitoring of psychosocial functioning, standardize the assessment methods used to identify patient’s psychosocial needs, quickly and reliably identify patients in need of psychosocial services, and allow medical teams to more effectively allocate psychosocial resources to those patients most in need. The PAT2.0_GEN has demonstrated high reliability and substantial content and predictive validity in other pediatric populations (e.g., kidney transplant). However, the psychometric properties of the measure have not been assessed in pediatric IBD. Several characteristics of the pediatric IBD population (e.g., intermittent course, high base rates of psychological and family dysfunction, stigmatizing nature of symptoms) distinguish it from the other pediatric populations (e.g., cancer, transplant)13; 16 for which the psychometric properties of the PAT2.0_GEN have been evaluated. As such, the psychometrics of the PAT2.0_GEN must be evaluated in the IBD population prior to clinical use. Therefore, the purpose of this study is to evaluate the psychometric properties of PAT2.0_GEN in a pediatric IBD sample. Reliability, convergent, and predictive validity of the PAT2.0_GEN will be evaluated.

This clinical report aims to review key self-management and adherence issues in pediatric inflammatory bowel disease (IBD) and to provide recommendations for health care providers regarding evidence-based assessment and treatment approaches to promote optimal self-management. Self-management difficulties in the form of nonadherence to treatment regimens are common in pediatric IBD and are influenced by various disease-related, individual, family, and health-professional relationship factors. To promote adaptive self-management, health care providers are encouraged to adopt a long-term preventive orientation which includes routine screening of barriers to self-management and nonadherence in the context of routine clinic appointments. The use of a multimethod approach to assessment which incorporates objective measures (e.g., pill counts or bioassays) may be particularly advantageous. Individualized treatment approaches that incorporate evidence-based practices, such as providing written treatment plans and offering opportunities to practice and receive feedback on skills may help to ameliorate minor self-management concerns; however, more severe or chronic self-management problems may require a referral for behavioral health intervention. Additional research to broaden our understanding of self-management in domains beyond medication adherence and to evaluate the impact of clinic-based interventions is imperative.

Objective: Eosinophilic esophagitis (EoE) is a chronic esophageal inflammatory condition with a paucity of information on health-related quality of life (HRQOL). The objective of the study was to report on the measurement properties of the PedsQL EoE Module. Methods: The PedsQL EoE Module was completed in a multisite study by 196 pediatric patients with EoE and 262 parents of patients with EoE. Results: The PedsQL EoE Module scales evidenced excellent feasibility (0.6%–3.1% missing), excellent group comparison reliability across total scale scores (patient a 0.93; parent proxy a 0.94), good reliability for the 7 individual scales (patient a 0.75–0.87; parent proxy a 0.81–0.92), excellent test–retest reliability (patient intraclass correlation coefficient 0.88; parent intraclass correlation coefficient 0.82), demonstrated no floor effects and low ceiling effects, and demonstrated a high percentage of scaling success for most scales. Intercorrelations with the PedsQL Generic Core Scales were in the medium (0.30) to large (0.50) range. PedsQL EoE Module scores were worse among patients with active histologic disease (� 5 eos/hpf) compared with those in remission (patient self-report: 63.3 vs 69.9 [P < 0.05]; parent proxy report: 65.1 vs 72.3 [P < 0.01]), and those treated with dietary restrictions compared with those with no restrictions (patient self-report: 61.6 vs 74.3 [P < 0.01]; parent proxy report: 65.5 vs 74.7 [P < 0.01]). Conclusions: The results demonstrate excellent measurement properties of the PedsQL EoE Module. Patients with active histologic disease and those treated with dietary restrictions demonstrated worse PedsQL scores. The PedsQL EoE Module may be used in the evaluation of pediatric EoE diseasespecific HRQOL in clinical research and practice.

The aim of the study was to examine the mediating role of youth depressive symptoms in the relation between parent distress and youth health-related quality of life (HRQOL) in a sample of adolescents with inflammatory bowel disease (IBD).Sixty-two adolescents, ages 13 to 17 years, with a confirmed diagnosis of IBD completed assessments of depressive symptoms and HRQOL. Each adolescent's primary caregiver completed a measure of parent stress related to his or her child's illness. Pediatric gastroenterologists provided data for disease severity assessments.Multiple regression analyses revealed that adolescent depressive symptoms fully mediated the relation between parent distress and several dimensions of HRQOL (ie, general well-being, emotional functioning, social functioning, and total HRQOL). Moreover, mediation was observed after statistically controlling for the effect of disease severity, IBD diagnosis, and significant demographic parameters on HRQOL.Findings suggest that adolescent depressive symptoms may serve as the mechanism through which parent distress is linked to poorer HRQOL in adolescents with IBD. Close monitoring of parent illness-related distress and adolescent depressive symptoms, as well as clinical interventions targeting these factors, is needed to promote optimal outcomes in adolescents with IBD.

Nonadherence to medical regimens is a significant and pervasive behavioral health issue in pediatric chronic illness management, with considerable implications for clinical decision making, morbidity and mortality, and cost-effectiveness of care (1–4). Across pediatric disease groups, the prevalence of nonadherence to prescribed medical regimens is approximately 50% in children (1,5) and 65% to 75% in adolescents (5,6). These estimates, however, have been derived primarily from nongastroen-terological disease populations. Although it is plausible that the prevalence of nonadherence is comparable in gastrointestinal diseases groups, the research is not as well developed as in other populations such as people with asthma (7) and diabetes (8), which have been the subject of a substantial body of research focused on both measurement and treatment of nonadherence. The treatment of gastrointestinal diseases often includes complex regimens involving multiple medications with varying dosing schedules, pill quantities, and dietary recommendations that may involve excluding a substantial amount of foods or ingredients from patients’ diets. Additionally, with continued advancement of therapeutic technology expanding the variety of disease treatment options, issues pertaining to assessment and treatment of nonadherence are increasingly critical to evaluating the long-term utility and clinical outcome of medical interventions, identifying predictive factors associated with nonadherence, and reducing morbidity. Adherence assessment approaches vary depending on the target treatment (eg, medication, diet) and data source (eg, patient, parent, provider). Several methods exist, each with advantages and disadvantages; Table 1 provides a summary of these assessment approaches. Treatment of nonadherence is an area in pediatric research that is considerably underdeveloped. Current research across pediatric populations suggests that multicomponent interventions that target educational, organizational, and behavioral aspects of adherence are most promising, given that education and organizational approaches alone have generally been insufficient (1). TABLE 1 Current assessment approaches for treatment regimen adherence Much of the research on adherence to treatment regimens in gastroenterology has been conducted in adult patient populations. Unfortunately, this is of limited utility to pediatric gastroenterologists and other health care providers because disease self-management in adults does not correspond well with pediatric disease self-management. There are several potential reasons for this. First, the developmental challenges in childhood and adolescence are substantially more complex than in adulthood. Second, cognitive and behavioral patterns affecting self-management (eg, health beliefs) are likely to be more stable in adults than in children. Third, whereas adherence to treatment regimens is the responsibility of the adult patient, children and adolescents share disease management responsibility with parents or other family members, and the degree of responsibility is likely to vacillate throughout childhood. Thus, it is important to understand the unique issues pertaining to pediatric gastroenterology treatment adherence. The purpose of this article is to provide a review and critical evaluation of the extant literature in pediatric gastroenterology that pertains to treatment regimen adherence and to provide recommendations for future investigation. Specifically, research in 2 disease groups, inflammatory bowel disease (IBD) and celiac disease (CD), is reviewed with particular attention to measurement issues and treatment of nonadherence. These diseases were chosen for review because of the potentially significant adherence issues inherent in the complex medication and/or dietary treatment regimens to which patients are required to adhere. A systematic search of the medical and psychological/behavioral literature was conducted with no date restriction, using the PubMed and PsycINFO electronic databases. Key words included inflammatory bowel disease, Crohn disease, ulcerative colitis, celiac disease, children, adolescent, pediatric, adherence, and compliance. Notably, a third disease group, eosinophilic disorders (eg, eosinophilic esophagitis, eosinophilic gastroenteritis), was included in the literature search but was excluded from the review because only 2 articles met the criteria for inclusion. Articles were included if the sample was exclusively pediatric (ie, younger than 21 years old), the study was empirical, adherence was assessed as part of a study or was an outcome of intervention in a treatment study, treatment was the focus of adherence (eg, procedural compliance was excluded), and the article was in English. Bibliographies of articles were also reviewed, and relevant articles meeting the inclusion criteria were included. The appendix summarizes each article included in this review. APPENDIX