Longitudinal Barriers to Thiopurine Adherence in Adolescents With Inflammatory Bowel Diseases.

Objectives: Cross-sectionally, more adherence barriers are associated with lower medication adherence. However, little is known about longitudinal associations between adherence barriers and adherence. Among adolescents with inflammatory bowel diseases (IBD), this study examined both (1) how time-varying self-reported adherence barriers affect daily thiopurine adherence and (2) how adherence barriers at baseline affect daily thiopurine adherence over a six-month period. Methods: Eighty-one adolescents 11-18 years old prescribed a once-daily oral IBD maintenance medication participated in a six-month observational study. Adherence barriers were self-reported monthly via the Medication Adherence Measure (MAM): Medication Subscale. Daily adherence estimates were collected via Medication Event Monitoring System (MEMS) Track Caps. Results: Generalized linear mixed modeling indicated that time alone did not significantly predict whether one was more likely to be adherent (p = .602). However, increasing adherence barriers lowered the likelihood that a participant would be adherent on a given day, and the interaction between time and barriers predicted likelihood of adherence on a given day (p < .01). Specifically, when participants reported no adherence barriers at baseline, adherence did not significantly change over time (p = .369). However, when barriers were endorsed, adherence decreased over time (p < .01). Conclusions: Fewer adherence barriers over time predicted greater likelihood of adherence on a given day, which is consistent with previous cross-sectional research. Routine assessment of barriers to adherence over the course of adolescence is critical in addressing suboptimal adherence behavior in youth with IBD.

School Functioning in Adolescents With Inflammatory Bowel Diseases: An Examination of Disease and Demographic Correlates.

Background: Symptoms of inflammatory bowel diseases (IBD) can interfere with optimal psychosocial functioning of adolescents, including school functioning. School functioning can be broadly conceptualized as involving attendance, academic performance, and participation in academic and extracurricular activities. However, previous research has largely examined the impact of IBD on school attendance. The present study aimed to describe school attendance, performance, and participation in a sample of adolescents with IBD and to examine demographic and disease-related correlates of poorer school functioning. Methods: One-hundred sixty-one adolescent-parent dyads (M [SD] adolescent age = 14.5 [1.9] years, 43% female) completed questionnaires assessing demographics, school attendance, performance, and participation. Clinical disease activity was rated by physicians at the time of study enrollment. Results: Difficulties with school attendance were reported, with nearly three-quarters of participants reporting school absences due to visits with doctors or hospitalizations and just under half of the sample reporting general school absences and missing school due to not feeling well. In bivariate analyses, older age was associated with poorer school performance and participation, whereas greater disease activity was associated with poorer school attendance. In regression analyses, greater disease activity and older age emerged as the most salient predictors of poorer school attendance. Older age also emerged as the most salient predictor of school performance and participation. Conclusions: Demographic factors and age in particular were more consistent predictors of school functioning than disease factors. Special attention to older youth and those with active disease may be important to ensure optimal school functioning.

Perceived Impairment in Sports Participation in Adolescents With Inflammatory Bowel Diseases: A Preliminary Examination.

OBJECTIVE: Physical activity (PA) is important for adolescents with inflammatory bowel diseases (IBDs) given the increased risk of developing osteoporosis and the increased risk of IBD-related complications among those with IBD and obesity. Symptoms such as fatigue, abdominal pain, nausea, and frequent bowel movements can interfere with PA. Sports participation is an important source of PA for adolescents; however, the extent to which IBD interferes with sports participation is unstudied. The present study aimed to examine demographic, health-related, physical, and psychosocial correlates of perceived impairment in sports participation. METHOD: Seventy-six adolescents (M[SD] = 14.5 [1.8] years, 45% girls) completed surveys of perceived impairment in sports participation, demographics, physical health, and psychosocial health. Physicians rated disease activity at enrolment. All participants were diagnosed with IBD for at least a year and prescribed a daily oral medication. RESULTS: Nearly half of participants reported at least occasional interference in sports participation because of their IBD. Active disease (P = 0.014), older age (P = 0.006), and poorer disease-specific quality of life, and quality of life in physical health and psychosocial domains were associated with greater impairment in sports participation in bivariate analyses (P < 0.001). In regression analyses, systemic disease-related symptoms, body image concerns, and older age emerged as the strongest predictors of impairment in sports participation (P < 0.05). CONCLUSIONS: Older adolescents, those with greater systemic symptoms, and those with poorer body image may be particularly at risk for impairment in sports participation. Addressing barriers to sports participation may be a useful strategy in enhancing PA in this patient group.

Examining predictors of healthcare utilization in youth with inflammatory bowel disease.

BACKGROUND AND AIMS: Traditional definitions of healthcare utilization (HCU) emphasize clinical visits and procedures. Clinic calls, an understudied form of HCU, occur with high frequency. Understanding and examining predictors of HCU, such as disease activity and parent distress, may help reduce overutilization. METHODS: A total of 68 adolescents with inflammatory bowel disease [IBD; mean (SD) =14.18 (1.92) years] and their parents participated. Parent distress was assessed through parent report on the PedsQL Family Impact Module, and physicians provided ratings of patient disease activity using the Physician's Global Assessment index. Medical record reviews yielded HCU and clinic call information for 12 months after enrollment. HCU was operationalized as the total number of routine and sick gastrointestinal clinic visits, Emergency room visits, and IBD-related hospitalizations. A call composite reflected the total number of calls related to IBD symptoms/illness. RESULTS: Disease activity and parent distress predicted 12% of the variance in calls and 12% of the variance in HCU. Disease activity was the only significant predictor of clinic calls after accounting for the impact of other predictors; however, parent distress was the only individual variable that contributed significant variance to the prediction of HCU after accounting for other predictors. CONCLUSION: Greater parent distress and disease activity together predicted HCU and clinic calls. Disease activity was the most salient predictor of calls, whereas parent distress was the most salient predictor of in-person HCU. Clinic calls should not be overlooked as a form of HCU, as communication that takes place outside of scheduled appointments utilizes resources and may indicate poorer disease control.

Can You Teach a Teen New Tricks? Problem Solving Skills Training Improves Oral Medication Adherence in Pediatric Patients with Inflammatory Bowel Disease Participating in a Randomized Trial.

BACKGROUND: Medication nonadherence is associated with higher disease activity, greater health care utilization, and lower health-related quality of life in pediatric inflammatory bowel diseases (IBD). Problem solving skills training (PSST) is a useful tool to improve adherence in patients with chronic diseases but has not been fully investigated in IBD. This study assessed feasibility, acceptability, and preliminary efficacy of PSST in pediatric IBD. METHODS: Recruitment occurred during outpatient clinic appointments. After completion of baseline questionnaires, families were randomized to a treatment group or wait-list comparison group. The treatment group received either 2 or 4 PSST sessions. Youth health-related quality of life was assessed at 3 time points, and electronic monitoring of oral medication adherence occurred for the study duration. RESULTS: Seventy-six youth (ages 11-18 years) on an oral IBD maintenance medication participated. High retention (86%) and treatment fidelity rates (95%) supported feasibility. High satisfaction ratings (mean values ≥4.2 on 1-5 scale) supported intervention acceptability. Modest increases in adherence occurred after 2 PSST sessions among those with imperfect baseline adherence (d = 0.41, P < 0.10). Significant increases in adherence after 2 PSST sessions were documented for participants aged 16 to 18 years (d = 0.95, P < 0.05). Improvements in health-related quality of life occurred after 2 PSST sessions. No added benefit of 4 sessions on adherence was documented (d = 0.05, P > 0.05). CONCLUSIONS: Phone-delivered PSST was feasible and acceptable. Efficacy estimates were similar to those of lengthier interventions conducted in other chronic illness populations. Older adolescents benefited more from the intervention than their younger counterparts.

Adolescents with chronic pain and associated functional disability: A descriptive analysis.

The purpose of this research was to describe the biopsychosocial characteristics of adolescents with chronic pain and functional disability. Data were obtained from a registry of 100 adolescents (mean age = 15.84, SD = 2.72; 21 males) admitted to an interdisciplinary pain rehabilitation program. Clinician ratings were used to categorize coping and personality styles. The most common chief complaint at admission was limb pain (n = 44), followed by headache (n = 21) and abdominal pain (n = 17). Eighteen patients presented with other types of pain. The most frequent triggers to pain were physical trauma, medical condition or disability, and surgery or another medical procedure. Sleep problems, mental health difficulties, and high academic performance were common. Seven previously identified pain-associated disability factors, including passive or dependent coping style, chronic illness in a parent, personality consistent with alexithymia, unresolved family problems, early pain experiences, learning/developmental difficulties, and perfectionistic personality, were common. Ninety-eight adolescents presented with two or more of these contributing factors. Fifty-six adolescents had four or more of the factors. Adolescents with chronic pain and associated disability presented with numerous biopsychosocial factors that relate to their impairment. The understanding and attention to these factors will be important for successful rehabilitation.

Chronic pain in children and adolescents: 24-42 month outcomes of an inpatient/day hospital interdisciplinary pain rehabilitation program.

PURPOSE: The purpose of this research was to describe 24-42 month outcomes of a combined inpatient/day hospital interdisciplinary pain rehabilitation program for children and adolescents with chronic pain and functional disability. METHODS: One-hundred-seventy-three children and adolescents (mean age=15.1 years, SD=2.5) were treated in the three-week program. Mixed effects regression models (MERM) examined changes over time in pain ratings (0-10), school days missed by children and work days missed by parents in the preceding week, and the number of days hospitalized in the preceding month. RESULTS: Participants reported a significant decline in pain from admission to 24-42 month follow-up. The largest declines in pain occurred from discharge to 1-month follow-up (6.20 vs. 4.81 on a 0-10 numerical rating scale) and from 12 months to 24-42 month follow-up (4.90 vs. 3.56). Two distinct trajectories of treatment response were identified using growth mixture modeling: children with initially high pain ratings exhibited large reductions in pain ratings, while those with lower pain ratings at admission showed minimal reductions. Treatment resulted in significant reductions in school and work days missed and the number of days hospitalized (all p's < 0.001), with reductions evident at 1-month follow-up and maintained through 24-42 month follow-up. CONCLUSIONS: These results suggest that interdisciplinary pain rehabilitation is a promising approach to chronic pain and associated disability in children, with enduring improvements found 24-42 months following program completion. Distinct trajectories of treatment response were identified.

Pain severity and pain catastrophizing predict functional disability in youth with inflammatory bowel disease.

BACKGROUND: Abdominal pain is commonly reported by youth with IBD. In a significant subset of youth, pain severity and pain catastrophizing (i.e., unhelpful thoughts related to the pain) may contribute to more negative outcomes and greater impairment in functioning. This study aimed to examine relationships of pain severity and pain catastrophizing with functional disability among a sample of youth with inflammatory bowel disease (IBD). METHODS: Seventy-five youth aged 11 to 18 years completed ratings of abdominal pain severity, pain catastrophizing, and functional disability using validated measures. Disease activity was rated by treating physicians. RESULTS: Over half of participants reported abdominal pain in the past two weeks, and pain was present among those with and without clinical disease activity. Nearly one-third of youth reported mild to moderate functional disability. After controlling for gender, pain severity accounted for 15% of the variance in patient functional disability. Moreover, pain catastrophizing contributed significant variance to the prediction of functional disability (approximately 7%) beyond the role of pain severity. CONCLUSIONS: Greater attention to the role of pain catastrophizing in contributing to functional disability in youth with IBD may be important given that pain-related cognitions are modifiable via intervention.