Perceived Stigma in Patients with Autoimmune Hepatitis.

Perceived stigma (PS) adversely impacts psychosocial and disease outcomes in patients with chronic liver diseases (CLD), and those with autoimmune hepatitis (AIH) may be at risk for PS given inaccurate assumptions about the origin of their diagnosis. The aims of the current study are to describe the frequency of PS in patients with AIH, compare rates of PS in AIH to rates of PS in primary biliary cholangitis (PBC) and CLD, and examine demographic correlates of PS. 262 adults with AIH (95% female, Mage = 51.53 years) completed online questionnaires on demographics, disease information, and PS. 54-68% reported PS with themes of selective disclosure, non-disclosure, or hiding diagnosis. PS was higher in those with AIH compared to those with PBC, but lower than those with various CLD. Age was inversely related to PS. Given the results, provider screening of PS and integration of clinical health psychologists may be helpful for identifying PS in patients with AIH.

Vaccine Attitudes Mediate Relationships Between Caregiver Political Ideology and Likelihood of Child Vaccination for COVID-19.

INTRODUCTION: The COVID-19 vaccine has become available to children ages 5-12, yet vaccine uptake is suboptimal. Political ideology is a correlate of COVID-related beliefs and vaccine likelihood among US adults. However, since political ideology is not easily modifiable, attention to modifiable mechanisms that may explain links between political ideology and vaccine hesitancy is important in addressing this public health crisis. Caregiver attitudes around vaccine safety and efficacy have been related to vaccine uptake in other populations and warrant additional study in the context of COVID-19. The current study examined whether caregiver's attitudes regarding the safety and efficacy of the COVID-19 vaccine mediated the relationship between caregiver political ideology and likelihood of having their child vaccinated. METHODS: 144 US caregivers of children (6-12 years) completed an online survey in summer 2021 to assess political ideology, vaccine-related beliefs, and likelihood of having their child vaccinated against COVID-19. RESULTS: Caregivers with more liberal political views reported higher likelihood of eventual child vaccination compared to caregivers who reported a more conservative views (t(81) = 6.08, BCa CI [2.97, 5.67]). Moreover, parallel mediation models indicated caregiver?s perceptions of risks (BCa CI [-.98, -.10]) and efficacy (BCa CI [-3.16, -2.15]) of the vaccine each mediated the aforementioned relationship, with perceived efficacy explaining significantly more variance than risks. CONCLUSIONS: Findings extend knowledge by identifying social cognitive factors that impact caregiver vaccine hesitancy. Interventions to address caregiver's hesitancy to have their child vaccinated through modifying caregiver's inaccurate beliefs regarding vaccines or enhancing perceptions of vaccine efficacy is warranted.

Substance Use in Adolescents and Young Adults With Inflammatory Bowel Diseases: An Exploratory Cluster Analysis.

OBJECTIVES: Adolescents and young adults (AYAs) with chronic illnesses use substances at similar, if not greater, rates compared to healthy peers. The present study aimed to examine rates and patterns of tobacco use, marijuana use, and binge drinking in AYAs with inflammatory bowel diseases. We expected that substance use would be associated with poorer physical health, psychosocial functioning, and disease management. METHODS: One hundred thirty-two AYAs completed a single set of surveys assessing demographics, disease activity, healthcare utilization, health-related quality of life (HRQoL), inflammatory bowel disease-specific self-efficacy, adherence barriers, disease management skills, and substance use in the last 30 days (eg, tobacco use, marijuana use, binge drinking). Exploratory cluster analyses, followed by chi-square tests and analyses of variance examined patterns of substance use and correlates of cluster membership. RESULTS: Four patterns emerged from the sample: Global Users (n = 17), Marijuana Users Engaging in Binge Drinking (n = 18), Exclusive Binge Drinkers (n = 21), and Global Abstainers (n = 76). Groups differed by age, gender, disease activity, healthcare utilization, HRQoL, self-efficacy, and adherence barriers with medium and large effect sizes (P < .05). CONCLUSIONS: Older age, male gender, active disease, at least 1 hospitalization in the past year, low self-efficacy, low HRQoL, and high adherence barriers were significantly more likely for those reporting multisubstance use. In addition, all those reporting both marijuana use and binge drinking also reported tobacco use. Future research ought to examine these associations longitudinally and throughout the transition to adult care.

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.

Mother-Daughter Communication about Sexual Behavior and Reproductive Health in Females with Chronic Health Conditions.

PURPOSE: Females with chronic health conditions (CHCs) engage in risky sexual behavior at least as frequently as their healthy counterparts. Among healthy youth, mother-daughter communication about sexual behavior and reproductive health protects against risky sexual behavior. Yet, little is known about the nature of this type of communication in female adolescents with CHCs or factors that contribute to communication. This study described mother-daughter communication frequency, timing, and comfort and examined the role of demographic/disease factors and maternal outcome expectancy (OE), in contributing variance to mother-daughter communication about risky sexual behavior and reproductive health. DESIGN AND METHODS: One hundred mother-daughter dyads from outpatient clinics located within a hospital participated. Daughters [ages 14-19; M(SD) age = 16.28 (1.53)] provided demographic information and mothers self-reported frequency, timing, comfort, and OE of mother-daughter communication about sexual behavior and reproductive health. RESULTS: Reproductive health topics were discussed with the greatest frequency. Condom and birth control use were discussed less often. Overall, maternal comfort levels were high across topics. Maternal positive OE was associated with all communication domains, accounting for between 11 and 21% of the variance beyond relevant demographic factors. CONCLUSIONS: Fostering positive maternal OE may enhance multiple domains of mother-daughter communication about sexual behavior and reproductive health in samples of female adolescents with various CHCs. PRACTICE IMPLICATIONS: Since mothers with positive OE talk about sexual behavior earlier, more frequently, and with greater comfort; nurses are in a unique position to empower mother-daughter communication about sexual behavior and reproductive health and enhance mother OE during clinical encounters.

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.

Adherence to Infliximab Treatment in a Pediatric Inflammatory Bowel Disease Cohort.

The aims of the study were to describe infliximab adherence in a pediatric inflammatory bowel disease cohort, to identify demographic and disease factors associated with adherence, and to examine differences in acute care use among adherent and nonadherent patients. Charts of patients who received infliximab at the Children's Hospital of Wisconsin (CHW) between October 2010 and October 2012 were retrospectively reviewed. A total of 151 patients met the inclusion criteria; 91.4% of the patients were adherent. Nonadherent patients had more emergency room visits and hospitalizations than adherent patients. The study is the first to show high adherence rates to infliximab in a pediatric cohort.

Self-management in pediatric inflammatory bowel disease: A clinical report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

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 that incorporates objective measures (eg, 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 effect of clinic-based interventions is imperative.

Relationships Between Abdominal Pain, Mental Health, and Functional Disability in Youth With Inflammatory Bowel Diseases: Pain Catastrophizing as a Longitudinal Mediator.

OBJECTIVES: Abdominal pain can be a debilitating symptom for youth with inflammatory bowel diseases (IBDs). Across various pediatric conditions, pain predicts adverse physical and mental health outcomes. Understanding mechanisms by which pain impacts outcomes is of critical importance to enhance the well-being of those with IBDs. Pain catastrophizing mediates the aforementioned relationships in other pediatric populations, but little research has examined its role in pediatric IBDs. Attention to the role of pain catastrophizing as a potential mediator in pediatric IBD is the important given unique elements of the pain experience for this population. This study aimed to examine pain catastrophizing as a potential mediator of the relationship between abdominal pain and adverse outcomes in youth with IBDs. METHODS: Seventy six youth (ages 11 to 18; M [SD] age=14.71 [1.80]) with IBD completed the Abdominal Pain Index (T1), Pain Catastrophizing Scale (T2, week 12), Revised Children's Anxiety and Depression Scale (T3, week 20), and Functional Disability Inventory (T3, week 20). RESULTS: Catastrophizing mediated the relationship between abdominal pain and both anxiety symptoms ( b =1.61, Bias-Corrected Accelerated [BCa] CI, 0.25, 4.62) and functional disability ( b =0.77, BCa CI, 0.15, 2.38). A direct effect of abdominal pain on low mood was also noted ( b =1.17, BCa CI, 0.03, 2.50). Post hoc analyses examining mediation via catastrophizing subscales indicated that while magnification and rumination functioned as mediators, helplessness did not. DISCUSSION: Findings are consistent with fear avoidance models and suggest that interventions directed at pain catastrophizing may be worthwhile in pediatric IBD populations, given catastrophizing-mediated relationships between pain and mental and physical health outcomes.

Perceived effect of pediatric inflammatory bowel diseases on academics, college planning, and college adjustment.

ObjectiveTo examine the relationship between perceived effect of inflammatory bowel diseases (IBD) on high school academics and college planning on college adjustment. Participants: Participants (N = 97) were college students with IBD. Methods: Participants completed an online survey including the Student Adaptation to College Questionnaire and study-developed questions assessing the perceived impact of their diagnosis on their high school academics and college planning. Results: Most participants reported average college adjustment across domains, except personal-emotional adjustment with 47% of participants falling within the very low to low ranges. Nearly half reported IBD impacted their choice of college (49%). The impact of IBD on college planning was most consistently associated with domains of college adjustment. Conclusions: IBD severely impacts college planning, decision-making, and adjustment in college-bound youth. Perceiving that having a chronic illness impacts college planning may result in greater difficulty with academic adjustment, attachment to the institution, and social adjustment during college.

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.

Moving On: Transition Readiness in Adolescents and Young Adults With IBD.

Background: Inflammatory bowel diseases (IBD) often begins early in life. Adolescents and young adults (AYA) with IBD have to acquire behaviors that support self-care, effective healthcare decision-making, and self-advocacy to successfully transition from pediatric to adult health care. Despite the importance of this critical time period, limited empirical study of factors associated with transition readiness in AYA exists. This study aimed to describe transition readiness in a sample of AYA with IBD and identify associated modifiable and nonmodifiable factors. Methods: Seventy-five AYA (ages 16-20) and their parents participated. AYA and parents reported on demographics, patient-provider transition-related communication, and transition readiness. AYA self-reported on disease self-efficacy. Disease information was abstracted from the medical record. Results: Deficits in AYA responsibility were found in knowledge of insurance coverage, scheduling appointments, and ordering medication refills. Older AYA age, higher AYA disease-management self-efficacy, and increased patient-provider transition communication were each associated with higher overall transition readiness and AYA responsibility scores. Regression analyses revealed that older AYA age and increased patient-provider transition-related communication were the most salient predictors of AYA responsibility for disease management and overall transition readiness across parent and AYA reports. Conclusions: AYA with IBD show deficits in responsibility for their disease management that have the potential to affect their self-management skills. Findings suggest provider communication is particularly important in promoting transition readiness. Additionally, it may be beneficial to wait to transition patients until they are older to allow them more time to master skills necessary to responsibly manage their own healthcare.

Reliability and validity of the Beliefs About Medication Scale in pediatric inflammatory bowel disease.

Low adherence is a pervasive issue among youth with inflammatory bowel diseases (IBD), yet our understanding of perceived adherence barriers is hampered by a lack of validated instruments. This study sought to address this by evaluating the reliability and predictive validity of the Beliefs About Medication Scale (BAMS) among youth with IBD. Seventy-six youth (ages 11-18) with IBD who were prescribed a daily oral IBD medication completed baseline ratings of perceived adherence barriers via the BAMS. Parents provided information about patient demographic and disease factors. Subjective medication adherence was assessed via the medication adherence measure. Objective medication adherence was assessed via Medication Event Monitoring System (MEMS) Track Caps. BAMS subscales demonstrated adequate internal consistency ( αs = .78-.90) and test-retest reliability ( rs = .64-.79). BAMS subscales reliably distinguished between adherent and low adherent groups, though intent to adhere (IA) was the only independent predictor of adherence status. The BAMS holds promise as a tool for assessing adherence barriers among adolescents with IBD. IA may be of particular value in identifying adolescents at risk for low adherence.

What Teens Do Not Know Can Hurt Them: An Assessment of Disease Knowledge in Adolescents and Young Adults with IBD.

BACKGROUND: Although adequate disease-related knowledge is recognized as an important component of transition readiness, little empirical attention has been directed toward understanding the levels of disease knowledge of adolescents and young adults (AYAs) with inflammatory bowel diseases (IBDs) or factors associated with higher levels of knowledge. This study described disease knowledge in a sample of AYAs with IBDs and examined individual, family, and patient-provider relationship factors associated with higher knowledge. METHODS: Seventy-five AYAs (ages 16-20) and their parents participated. AYAs and parents reported on demographics, parent autonomy granting behaviors, health care satisfaction, patient-provider transition-related communication, and disease knowledge. AYAs self-reported on disease self-efficacy. Disease information was abstracted from the medical record. RESULTS: On average, AYAs answered 8.20 (SD = 1.75) of 12 knowledge questions correctly. Over 85% of AYAs correctly identified their type of IBD, number and type of IBD-related surgeries, and name of their current IBD medical provider. In contrast, knowledge about frequency of medication refills, effects of drugs and alcohol on IBD, and number to call to schedule medical appointments was suboptimal (i.e., 50% or fewer provided a correct response). Older AYA age, greater AYA health care satisfaction, higher AYA self-efficacy, and more frequent patient-provider transition-related communication were each associated with higher IBD-related knowledge. CONCLUSIONS: To promote disease knowledge, providers should foster AYA self-efficacy by encouraging age-appropriate involvement in IBD management and make discussion of transition-related issues a priority during clinical appointments. Moreover, fostering collaborative and positive relationships with patients will improve satisfaction and may also enhance knowledge.

Self-management in patients with inflammatory bowel disease: strategies, outcomes, and integration into clinical care.

Self-management, including medication adherence, is associated with improved health and outcomes for patients with inflammatory bowel disease. The concept of self-management is complex, but can be divided into those aspects that involve the individual patient, those that involve the provider-patient relationship, and those that encompass the social environment. At the individual level, enhancing problem-solving skills and self-efficacy have both been shown to improve self-management tasks, particularly adherence to treatment. However, it is critical to consider these domains from a lifespan perspective because these processes by which self-management can be improved are distinct for children, adolescents, young adults, and adults. A particular emphasis is placed on strategies to improve self-management of older adolescents and young adults as they transition from pediatric to adult providers. The review concludes with recommendations for providers, including rationale and techniques for assessing and promoting patient self-efficacy, encouraging the development of problem-solving skills, improving the patient-provider relationship, and enhancing social support. Providers are encouraged to utilize elements of problem-solving skills training, engage in collaborative relationships with their patients, and offer their patients recommendations for how to increase the quality of their social support networks as ways of increasing overall self-management.

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.

Disease Activity Does Not Explain It All: How Internalizing Symptoms and Caregiver Depressive Symptoms Relate to Health-related Quality of Life Among Youth with Inflammatory Bowel Disease.

BACKGROUND: Health-related quality of life (HRQoL) is a multidimensional constructinfluenced by disease, individual, and environmental factors. Greater disease activity (DA) predicts poorer HRQoL, but disease status alone does not fully account for individual variability in HRQoL. This investigation tested the role of patient and caregiver internalizing symptoms in explaining the relationship between DA and patient HRQoL. METHODS: Participants included 83 subjects aged 11 to 18 diagnosed with inflammatory bowel disease and their caregiver. Patients reported on their HRQoL. Caregivers rated their own depressive symptoms and patients' internalizing symptoms (depression, anxiety, and somatization). Physicians rated DA. RESULTS: Greater DA was positively associated with subjects' internalizing symptoms and negatively associated with HRQoL. Mediation analyses found support for significant indirect effects on the relationship between DA and HRQoL through the subjects' internalizing symptoms, through their internalizing symptoms and caregivers' depressive symptoms, sequentially. CONCLUSIONS: Greater DA independently relates to poorer HRQoL. In addition, DA relates to greater child internalizing problems which in turn relate to higher levels of caregiver depressive symptoms and poorer HRQoL. Providers may consider a family-based approach to screen for internalizing problems, especially in patients with active disease, because caregiver and child mood symptoms may partially explain worsening child HRQoL.

Feeling Fine: Anxiety and Depressive Symptoms in Youth with Established IBD.

BACKGROUND: Previous research is discrepant with respect to the prevalence of internalizing symptoms (i.e., depressive and anxiety symptoms) in pediatric inflammatory bowel disease (IBD) samples. Moreover, few studies have examined the combined influence of demographic and disease-related risk factors for internalizing symptoms. This study described rates of depressive, anxiety, and overall internalizing symptomatology in a multisite sample of youth with established IBD diagnoses. Additionally, the study examined risk factors for elevated depressive, anxiety, and internalizing symptoms, including those in demographic (i.e., family income and sex) and disease (i.e., disease activity and functional disability) domains. METHODS: One hundred sixty-one youth (aged 11-18 yr) with established IBD diagnoses, primarily inactive disease, prescribed oral medications, and who were not taking corticosteroids were recruited from outpatient Gastroenterology Clinics at 3 children's hospitals. This article reflects a secondary analysis of data collected from 2 larger studies examining oral medication adherence and psychosocial functioning in pediatric IBD. After providing written consent/assent, participants completed questionnaires assessing demographics, functional disability, and internalizing symptoms. Medical records were reviewed for disease information and clinical disease activity ratings. RESULTS: Only 13% of the sample reported clinically elevated anxiety or depressive symptoms. Perceived functional disability, but not clinical disease activity, was associated with higher depressive and anxiety symptoms, and higher overall internalizing symptomatology. CONCLUSIONS: Current results highlight the need to look beyond disease severity and examine the perception of functional disability of patients with IBD when seeking to identify youth at risk for internalizing symptoms such as depression and anxiety.

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.

Exploring health-related quality of life and social functioning in adolescents with inflammatory bowel diseases after attending camp oasis and participating in a Facebook group.

BACKGROUND: Youth with inflammatory bowel diseases are at risk for impaired health-related quality of life (HRQoL) and problems with social functioning. This study examined the impact of attending Camp Oasis (a disease-specific weeklong camp experience) on the HRQoL and social functioning of youth with inflammatory bowel diseases. Additionally, the study collected pilot data on whether a postcamp Facebook group contributed to maintenance or enhancement of these factors. METHODS: Twenty-one youth ages 14 to 17 years who attended Camp Oasis and were Facebook users participated. HRQoL and social functioning (i.e., social support and social connectedness) were assessed through validated youth-report questionnaires at precamp, postcamp, and post-Facebook group. The Facebook group was 8 weeks in duration and encouraged campers to continue interacting in a private, protected setting. RESULTS: Analyses of effect sizes (i.e., Cohen's d) indicated medium and statistically significant increases in HRQoL from precamp to postcamp (d = 0.40) and small increases in social functioning (d = 0.15-0.24). Additional improvements in social functioning were seen from postcamp to post-Facebook group (d = 0.21-0.32), and overall improvements were observed in all domains (d = 0.17-0.52). CONCLUSIONS: Findings replicated those of previous research in documenting the value of Camp Oasis on enhancing HRQoL. Both the camp experience and the Facebook group contributed to improvements in youth social functioning. Thus, supplementing the camp experience with membership in an online community may enhance social functioning in adolescents with inflammatory bowel diseases.