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Objective We conducted a pre-post pilot trial to determine the feasibility and acceptability of a multi-component intervention (pre-clinic letter, shared decision making cards and follow-up phone call) designed to facilitate SDM in pediatric inflammatory bowel disease (IBD). Methods We recruited physicians (n = 11) caring for IBD patients and families (n = 36) expected to discuss anti-tumor necrosis treatment. We measured feasibility and acceptability of the intervention, observed SDM, perceived SDM, decision conflict, and regret. Medical records were used to assess clinical outcomes, time to decision and adherence. We compared all outcomes between the usual care and intervention study arms. Results Two out of three intervention components were feasible. Visit length increased significantly in the intervention arm. Parents and patients rated the intervention as acceptable, as did most physicians. The intervention was associated with a higher-level of observed SDM. There was no difference perceived SDM, decision conflict, regret or quality of life outcomes between arms. Physician global assessment improved over time in the intervention arm. Conclusions This pilot trial provides important guidance for developing a larger scale trial of a modified intervention. Practice implications Overall, our intervention shows promise in supporting SDM and engaging both parents and patients in pediatric IBD decisions.

Medication nonadherence and health literacy are key factors that influence the management of difficult-to-control asthma. Adherence, or the extent to which a patient follows a treatment plan, extends beyond asthma medication use and includes appropriate inhaler technique. Assessment of adherence is critical prior to making a diagnosis of severe asthma and stepping up asthma therapy but is challenging in the clinical context. Health literacy, or the degree to which individuals can obtain, process, and understand health information and services needed to make health care decisions, is additionally important for asthma management and has been shown to impact medication adherence. Initiatives aiming to improve difficult-to-control asthma should address medication adherence and health literacy. Universal health literacy precautions are recommended while communicating with patients, in addition to the creation of low health literacy asthma action plans. To improve adherence, a comprehensive assessment of adherence should be conducted. Additional evidence based interventions aiming to improve adherence focus on appropriate inhaler use, improved access to medications, the use of digital platforms, school based asthma interventions, and the implementation of culturally tailored interventions. Data is limited regarding the use of these initiatives in patients with severe or difficult-to-control asthma.

Background Mobile health apps have the potential to promote adherence to headache management through the use of evidence-based behavior change techniques (e.g., self-monitoring). While many headache management apps exist, the extent to which these apps include behavior change techniques remains unknown. Thus, the present study systematically evaluated the content and quality of commercially available headache management apps. Methods Headache apps were identified using a systematic search in the Apple App and Google Play stores. A total of 55 apps were evaluated using the taxonomy of behavior change techniques and app quality using the Mobile App Rating Scale. Results Headache management apps included 0–14 behavior change techniques (Mean [M] = 5.89) and 0–8 headache management behavior change techniques (M = 4.29). App quality ranged from 2.84–4.67 (M = 3.73) out of 5.00. Three apps, Migraine Trainer, Easeday: Headache & Migraine, and PainScale, included the highest number of overall and headache management behavior change techniques along with good quality scores. Conclusions While randomized controlled trials are necessary to determine the efficacy of individual headache apps, most existing apps include evidence-based headache management behavior change techniques. Headache apps often focus on either self-monitoring or stress management via relaxation training, suggesting that patients’ needs should be used to inform app selection.

Mobile health (mHealth) apps have the potential to enhance pain management through the use of daily diaries, medication and appointment reminders, education, and facilitating communication between patients and providers. Although many pain management apps exist, the extent to which these apps use evidence-based behavior change techniques (BCTs) remains largely unknown, making it nearly impossible for providers to recommend apps with evidence-based strategies. This study systematically evaluated commercially available pain management apps for evidence-based BCTs and app quality. Pain management apps were identified using the search terms "pain" and "pain management" in the App and Google Play stores. Reviewed apps were specific to pain management, in English, for patients, and free. A total of 28 apps were coded using the taxonomy of BCTs. App quality was assessed using the Mobile App Rating Scale. Apps included 2 to 15 BCTs (M = 7.36) and 1 to 8 (M = 4.21) pain management-specific BCTs. Prompt intention formation, instruction, behavioral-health link, consequences, feedback, and self-monitoring were the most common BCTs used in the reviewed apps. App quality from the Mobile App Rating Scale ranged from 2.27 to 4.54 (M = 3.65) out of a possible 5, with higher scores indicating better quality. PainScale followed by Migraine Buddy demonstrated the highest number of overall and pain management BCTs as well as good quality scores. Although existing apps should be assessed through randomized controlled trials and future apps should include capabilities for electronic medical record integration, current pain management apps often use evidence-based pain management BCTs.

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.

Perceived illness stigma is associated with increased depressive symptoms in youth with inflammatory bowel disease (IBD), but the mechanisms by which stigma influences emotional adjustment remain unclear. It is possible that youth with IBD who are more present-focused and better able to come to terms with aspects of their disease that are less controllable (i.e. are mindful) may develop more adaptive strategies when facing illness uncertainty, resulting in more positive emotional adjustment. The present study examined the indirect association between illness stigma, illness uncertainty, depressive symptoms, and the potential moderating effect of mindfulness on this process. One hundred and seven youth (56 female, 51 male; M

Behavior is the most influential predictor for developing a medical condition and subsequently accounts for 40% of premature deaths1. Thus, simplistic approaches to complex health conditions are no longer viable or effective in producing optimal treatment outcomes. Successful psychological interventions have repeatedly demonstrated their profound effect on illness prevention, reduction of disease severity, and improved health-related quality of life2. Examples include cognitive behavioral therapy and acceptance and commitment therapy for pain, behavioral interventions to increase healthy lifestyle habits to treat obesity, and self-management support to increase treatment adherence. Despite decades of research, clinical anecdotes, and the World Health Organization’s biopsychosocial definition of health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity,”3 the lack of integrated care models across institutions perpetuates the dearth of behavioral healthcare, contributing to disease morbidity and mortality. Although society is shifting toward biopsychosocial healthcare approaches, the dualistic mind-body doctrine underlying the biomedical model remains ever-present4. The number of epidemics (e.g., obesity, diabetes, addiction) that continue to plague the United States, coupled with the generally lower level of US National Institutes of Health funding appropriated to mental health and pediatric institutes (e.g., National Institute of Mental Health, National Institute of Child Health and Human Development), are testaments to these systemic issues. It is of the utmost importance that comprehensive care is provided to promote quality of life for patients and the individuals affected and/or involved in care, particularly in pediatric health conditions5,6,7. However, despite dissemination of research, the translation and application into clinical care often lags behind, leaving many families with unmet needs. Providing well-rounded treatment for health conditions must be multifaceted8, hence the recent trend for multidisciplinary clinics. Yet, what … Address correspondence to K.L. Gamwell, Cincinnati Children’s Hospital Medical Center, Division of Behavioral Medicine & Clinical Psychology, Center for Adherence and Self-Management, 3333 Burnet Ave., MLC 7039, Cincinnati, OH 45229, USA. Email: kaitlyn.gamwell{at}cchmc.org.

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

The COVID-19 pandemic has presented unique circumstances that have the potential to both positively and negatively affect pediatric adherence and self-management in youth with chronic medical conditions. The following paper discusses how these circumstances (e.g., stay-at-home orders, school closures, changes in pediatric healthcare delivery) impact disease management at the individual, family, community, and healthcare system levels. We also discuss how barriers to pediatric adherence and self-management exacerbated by the pandemic may disproportionately affect underserved and vulnerable populations, potentially resulting in greater health disparities. Given the potential for widespread challenges to pediatric disease management during the pandemic, ongoing monitoring and promotion of adherence and self-management is critical. Technology offers several opportunities for this via telemedicine, electronic monitoring, and mobile apps. Moreover, pediatric psychologists are uniquely equipped to develop and implement adherence-promotion efforts to support youth and their families in achieving and sustaining optimal disease management as the current public health situation continues to evolve. Research efforts addressing the short- and long-term impact of the pandemic on pediatric adherence and self-management are needed to identify both risk and resilience factors affecting disease management and subsequent health outcomes during this unprecedented time.

OBJECTIVE The objective of this study was to design, code, and pilot test the feasibility and preliminary efficacy of a self-management digital therapeutic tool for adolescents with migraine. BACKGROUND Self-management of migraine in adolescents is complex and has important implications for health outcomes. A comprehensive and accessible approach to self-management is needed for youth with migraine, their parents, and clinicians. METHODS An iterative co-design process was used to develop and optimize the Migraine Manager's digital therapeutic self-management tool. Subsequently, 40 adolescents, age 11-18 years, were enrolled in an 8-week single-arm open label trial (N = 36 analyzed). The primary outcome was headache days. RESULTS Usage data for Migraine Manager were similar to other health app usage data and feedback from participants was uniformly positive, indicating acceptable feasibility. Preliminary efficacy was demonstrated by a reduction in headache days from 17.2 ± 8.5 at baseline to 7.9 ± 7.2 at 8 weeks (95% CI, -13.0 to -7.8; P

Objective Transition to adult IBD care continues to be a challenge. Efficacious models of improving transition to adult care in the United States are lacking. We present data from a pilot, prospective, non-randomized, intervention implemented at IBD centers in the Midwest and Southeast United States. Design and Methods Adolescents and young adults (AYAs; 16–20 years) with IBD and their parents completed a 4- to 5-month transition program (1 in-person group session; 4 individual telehealth sessions). Primary outcomes were feasibility (i.e., recruitment, retention, fidelity) and acceptability (i.e., program satisfaction). Secondary outcomes were changes in transition readiness, self-management skill acquisition, perceived readiness to transfer to adult care, and disease knowledge. Results The study exceeded goals for recruitment (target N = 20; actual: 36) and retention (target: 80%; actual: 86.11%). On average, it took participants 20.91 ± 3.15 weeks to complete our 4- to 5-month intervention and there were no deviations from the study protocol. Participant ratings for overall program satisfaction, perceived helpfulness, and program length and format were positive. Increases in transition readiness, t(30) = 8.30, d = 1.49, p < .001, self-management skill acquisition, t(30) = 3.93, d = 0.70, p < .001, and disease knowledge, t(30) = 8.20, d = 1.58, p < .001 were noted. AYA- and parent-perceived transfer readiness also improved (p’s < .05; d’s = 0.76–1.68). Conclusions This article presents feasibility and acceptability data for a 4- to 5-month transition intervention. Improvements in AYA transition readiness, self-management skill acquisition, IBD knowledge, and AYA/parent perceived transfer readiness were also observed.

Objective The objective of this study was to systematically evaluate commercially available medication adherence apps for the inclusion of behavior change techniques (BCTs) and to conduct a usability analysis on a subset of apps with adolescents and young adults living with a chronic illness. Methods Medication adherence apps were identified via a search of iTunes app store in August 2016. Seventy-five apps meeting initial inclusion criteria were independently coded by two researchers for the presence/absence of 26 BCTs. Twenty adolescents and young adults (ages: 13-20 years) with inflammatory bowel disease conducted usability testing on a subset of apps (n = 4). Results Across 75 apps coded for presence/absence of 26 BCTs, only 7 unique BCTs were identified. The number of BCTs per app ranged from 2 to 6, with an average of 3.3 BCTs. In usability testing, quality ratings varied across apps. Medisafe received the highest average scores on engagement, functionality, aesthetics, and information subscales. Medisafe and MyTherapy ranked first and second, respectively, on overall quality and perceived impact ratings. Conclusion Content evaluation revealed only a limited number of BCTs that have been translated to medication adherence apps. Among apps with comparable content, clear user preferences emerged based on perceived quality and usability. Greater collaboration is needed between psychologists and health technologists to incorporate more evidence-based BCTs in apps. Findings also indicate a need for app developers to consider and incorporate the preferences of younger end users to improve app quality and engagement for pediatric populations.

OBJECTIVE: To examine the health technology uses and preferences of adolescents with asthma using a qualitative descriptive individual interview approach. METHODS: Twenty adolescents were recruited from regularly scheduled asthma clinic appointments from February to July 2016. Patients were interviewed about their technology use and ways in which health technology could improve their asthma management using an open-ended semi-structured interview format. Interviews were audio recorded, transcribed, and coded into themes. RESULTS: Social media (e.g., Snapchat, Instagram) and general communication (e.g., messaging) were the most common uses of technology while medical reminders (e.g., appointment, refill, medication) were the most common use of health technology. Adolescents identified ways in which health technology could improve their asthma management including: 1) Tracking symptoms and medication, 2) Medical reminders, and 3) Asthma and self-management knowledge specifically related to medications and individual action plans. Other themes that emerged included a desire to customize health technology to fit with individual schedules and medical routines and use of health technology data with medical providers. CONCLUSIONS: Adolescents and parents experience a number of challenges related to managing asthma, and health technology interventions should focus on ways to improve adherence and self-management. Future research considerations and potential interventions including ways to integrate adolescent preferences with evidence-based interventions are discussed.

Objective: First, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL. Design: Cross-sectional observational study. Setting: Twenty-four cardiology centers from 15 countries across five continents. Patients: Four hundred thirty-five adult patients with congenital heart disease (177 Fontan and 258 ASD/VSD) ages 18-83 years. Outcome Measures: QOL and illness perceptions were assessed by the Satisfaction With Life Scale and the Brief Illness Perceptions Questionnaire, respectively. Results: Patients with a Fontan circulation reported lower QOL (Wald Z = −3.59, p =

Objective To summarize gluten-free diet (GFD) nonadherence risk factors, nonadherence rates, and current intervention research within an integrative framework and to develop a research agenda for the development and implementation of evidence-based GFD adherence interventions. Methods Topical review of literature published since 2008 investigating GFD adherence in pediatric samples. Results Reviews of pediatric studies indicate GFD nonadherence rates ranging from 19 to 56%. There are few evidence-based, published pediatric GFD adherence interventions. Novel assessments of GFD adherence are promising but require further study. Nonmodifiable and modifiable factors within individual, family, community, and health systems domains must be considered when developing future interventions. Clinical implications are discussed. Conclusions Avenues for future research include development and refinement of adherence assessment tools and development of evidence-based GFD adherence interventions. Novel technologies (e.g., GFD mobile applications) require empirical study but present exciting opportunities for adherence intervention.

Background: Nonadherence to treatment recommendations is associated with poorer outcomes in inflammatory bowel disease and may increase the cost of care. We examined the longitudinal relationship between nonadherence and health care costs and hypothesized that at least 3 distinct trajectories of nonadherence would be observed and that increasing nonadherence would account for significantly greater health care costs after controlling for disease activity. Methods: Ninety-nine patients aged 2 to 21 years with inflammatory bowel disease were recruited into this 2-year longitudinal study. Medication possession ratios were calculated from pharmacy refill data, disease activity ratings were obtained from medical charts, and hospital and physician charges associated with an International Classification of Diseases, Ninth Revision code for ulcerative colitis or Crohn's disease were obtained from the hospital's accounting database. Results: An average total cost effect size of d = 0.68 was observed between the increasing severity and stable low severity groups, but the confidence intervals overlap. Conversely, patients with increasing nonadherence demonstrated significantly higher health care costs than patients with stable ≤10%, stable 11% to 20%, or decreasing nonadherence. Conclusions: Medication nonadherence is related to increased health care costs after controlling for disease severity. Patients with increasing nonadherence over time demonstrate more than a 3-fold increase in costs compared with adherent patients. In addition, patients whose adherence improves over time incur approximately the same costs as those who are consistently adherent. This suggests that, in addition to leveraging prevention efforts to keep patients from becoming more nonadherent as treatment continues, efforts aimed at modifying adherence behavior may result in significant cost savings over time.

This study examined the feasibility and impact of a multicomponent adherence intervention among youth with Inflammatory Bowel Disease (IBD) who presented to clinic with poor adherence.Medical providers referred twelve adolescents for the intervention, who participated in 4 weekly visits with a caregiver aimed at improving adherence.Intervention session attendance was 100% and the intervention was rated as feasible and acceptable. Mean adherence increased 12% from baseline to post-intervention (p0.01), and 6% from baseline to 1-month follow-up (p0.025). A generalized linear model revealed significantly greater adherence from baseline to post-intervention (p0.001), and from baseline to 1-month follow-up (p0.01). Logistic Regression revealed a nearly 2:1 odds ratio during post-intervention when compared to the Baseline period (p0.001).Findings suggest that the delivery of a multicompoment adherence intervention to poorly adherent youth with IBD can result in significant improvements in their adherence to oral medication.An intervention individually tailored to each family's unique adherence barriers is a feasible and promising treatment approach for improving medication adherence among nonadherent youth seen in clinical care.

Healthcare disparities exist in pediatric asthma in the United States. Children from minority, low-income families in inner-city areas encounter barriers to healthcare, leading to greater rates of poorly controlled asthma and healthcare utilization. Finding an effective way to deliver high-quality healthcare to this underserved population to improve outcomes, reduce morbidity and mortality, and reduce healthcare utilization is of the utmost importance. The purpose of this study was to assess the feasibility and efficacy of a novel school-based care delivery model that incorporates video-based telehealth (VBT) medical and self-management visits with electronic inhaler monitoring to improve asthma outcomes. Over a 6-month period, children from inner-city, low-income schools with uncontrolled asthma completed seven scheduled medical visits with an asthma specialist and five self-management visits with an adherence psychologist at school using VBT. Composite Asthma Severity Index (CASI) scores and electronic inhaler monitor data were recorded and analyzed. A total of 21 patients were enrolled in the study. Study subjects with higher baseline severity (CASI ≥ 4 at visit 1) demonstrated a greater reduction in their score than those with lower baseline severity (CASI < 4 at visit 1). The CASI domains showed improvement in daytime symptoms, nighttime symptoms, and exacerbations. Adherence results demonstrated a significant improvement in adherence from baseline to postintervention. Study retention was 100%. This study demonstrates that a multicomponent medical and behavioral interventional program delivered by VBT to a school-based setting is feasible and can significantly improve asthma outcomes and care in a challenging population.

Background Pediatric patients with asthma take only approximately half of their prescribed medication. Digital interventions to improve adherence for youth with asthma exist and have the potential to improve accessibility, cost-effectiveness, and customizability. Objective To systematically review published research examining digital interventions to promote adherence to the treatment of pediatric asthma. Methods A systematic search of the PubMed, Scopus, CINAHL, PsycINFO, and reference review databases was conducted. Articles were included if adherence was an outcome in a randomized controlled trial of a digital intervention for children with asthma. We compared samples, intervention characteristics, adherence measurement and outcomes, as well as additional health outcomes across studies. Results Of the 264 articles reviewed, 15 studies met inclusion criteria and were included in the review. Overall, 87% of the digital interventions demonstrated improved adherence and 53% demonstrated improved health outcomes. All the promising interventions included a behavioral component and most were 3 to 6 months in length, delivered through a digital stand-alone medium (eg, automated personalized texts, mobile health apps, and website), and assessed adherence to controller medication. Conclusions Overall, digital interventions aimed at improving adherence are promising and also improve health outcomes in addition to medication adherence. Although future studies using evidence-based adherence assessment and multifactorial design should be conducted, the current literature suggests that both digital stand-alone interventions and interventions combining digital technology with support from a health care team member result in improved adherence and asthma outcomes. Recommendations for digital interventions for pediatric patients with asthma with adherence concerns are provided.

Background Medication non-adherence in paediatric ulcerative colitis (UC) has been associated with negative health outcomes including flares in disease activity. However, no studies to date have examined longitudinal adherence to maintenance medication in a prospective controlled trial. Aims To determine whether objectively measured adherence to standardised mesalazine (mesalamine) therapy over time was related to remission at 52 weeks and the need for treatment escalation in newly diagnosed paediatric patients with UC METHODS: PROTECT (NCT01536535) was a prospective, inception cohort, multi-site study of paediatric patients aged 4-17 years with newly diagnosed UC followed for 52 weeks. Patients received standardised mesalazine, with pre-established criteria for escalation to thiopurines or anti-TNFα inhibitors. Patients used pill bottles with electronic caps to monitor mesalazine adherence. We tested whether longitudinal adherence to mesalazine predicted steroid-free remission at week 52 (i.e. quiescent disease on mesalazine alone with no corticosteroids ≥4 weeks prior) and need for treatment escalation (i.e. introduction of immunomodulators, calcineurin-inhibitors or anti-TNFα inhibitors). Results Among 268 patients, average mesalazine adherence trajectories did not predict week 52 steroid-free remission. Declining adherence over time strongly predicted treatment escalation (β = -.037, P = .001). By month 6, adherence rate ≤85.7% was associated with treatment escalation. Conclusions Non-adherence may have affected therapeutic efficacy of standardised mesalazine, thereby contributing to need for treatment escalation. Routine adherence monitoring for at least 6 months following treatment initiation and addressing adherence difficulties early in the disease course are recommended.

Background: Shared decision making (SDM) between families and physicians may facilitate informed, timely decisions to proceed with biologic therapy in children with inflammatory bowel disease (IBD). Our team previously developed an SDM tool to aid communication between physicians and families when considering biologic therapy for children with IBD. Objective: We are conducting a prospective, pre-post pilot trial of a new SDM tool. The primary aim of the study is to assess feasibility of both the intervention and trial procedures for a future large-scale trial. Methods: We are enrolling physicians with experience prescribing biologic therapy in the past year and families of children with IBD. Families in the intervention arm receive a 3-step intervention including a letter sent before trial consent or clinic appointment, an in-clinic decision tool and a follow-up phone call. Our primary trial outcome is a measure of feasibility, with measures of clinical and decision outcomes secondary. We seek to enroll 27 families in each of 2 arms (usual-care and intervention) and plan data collection at the time of the initial visit or hospital stay, and at 1 week, 3 months, and 6 months after the initial visit. Conclusion: This study protocol is designed to demonstrate that integrating novel consent procedures, including timing and multiple versions of written consent, may increase trial feasibility while maintaining scientific rigor and full protection of study participants. Keywords: Pediatrics, Inflammatory bowel disease, Pilot trials, Consent

Objective The purpose of this investigation was to examine treatment adherence to medication and lifestyle recommendations among pediatric migraine patients using electronic monitoring systems. Background Nonadherence to medical treatment is a significant public health concern, and can result in poorer treatment outcomes, decreased cost-effectiveness of medical care, and increased morbidity. No studies have systematically examined adherence to medication and lifestyle recommendations in adolescents with migraine outside of a clinical trial. Methods Participants included 56 adolescents ages 11-17 who were presenting for clinical care. All were diagnosed with migraine with or without aura or chronic migraine and had at least 4 headache days per month. Medication adherence was objectively measured using electronic monitoring systems (Medication Event Monitoring Systems technology) and daily, prospective self-report via personal electronic devices. Adherence to lifestyle recommendations of regular exercise, eating, and fluid intake were also assessed using daily self-report on personal electronic devices. Results Electronic monitoring indicates that adolescents adhere to their medication 75% of the time, which was significantly higher than self-reported rates of medication adherence (64%). Use of electronic monitoring of medication detected rates of adherence that were significantly higher for participants taking once daily medication (85%) versus participants taking twice daily medication (59%). Average reported adherence to lifestyle recommendations of consistent noncaffeinated fluid intake (M = 5 cups per day) was below recommended levels of a minimum of 8 cups per day. Participants on average also reported skipping 1 meal per week despite recommendations of consistently eating three meals per day. Conclusions Results suggest that intervention focused on adherence to preventive treatments (such as medication) and lifestyle recommendations may provide more optimal outcomes for children and adolescents with migraine and their families. Once daily dosing of medication may be preferred to twice daily medication for increased medication adherence among children and adolescents.

Pediatric Crohn's Disease (CD) is associated with low trabecular bone mineral density (BMD), cortical area, and muscle mass. Low-magnitude mechanical stimulation (LMMS) may be anabolic. We conducted a 12-month randomized double-blind placebo-controlled trial of 10 minutes daily exposure to LMMS (30 Hz frequency, 0.3 g peak-to-peak acceleration). The primary outcomes were tibia trabecular BMD and cortical area by peripheral quantitative CT (pQCT) and vertebral trabecular BMD by QCT; additional outcomes included dual-energy X-ray absorptiometry (DXA) whole body, hip and spine BMD, and leg lean mass. Results were expressed as sex-specific Z-scores relative to age. CD participants, ages 8 to 21 years with tibia trabecular BMD 50% adherence, the effect was 0.38 (95% CI 0.17, 0.58, p < 0.0005). Within the active arm, each 10% greater adherence was associated with a 0.06 (95% CI 0.01, 1.17, p = 0.03) greater increase in spine QCT BMD Z-score. Treatment response did not vary according to baseline body mass index (BMI) Z-score, pubertal status, CD severity, or concurrent glucocorticoid or biologic medications. In all participants combined, height, pQCT trabecular BMD, and cortical area and DXA outcomes improved significantly. In conclusion, LMMS was associated with increases in vertebral trabecular BMD by QCT; however, no effects were observed at DXA or pQCT sites. © 2016 American Society for Bone and Mineral Research.

Purpose The purpose of this study was to examine patterns of adherence to a novel dietary supplement in pediatric cystic fibrosis. Adherence to dietary supplementation in cystic fibrosis is challenging, and examination of patterns of adherence behavior over time is needed to better characterize subgroups of patients who need self-management support. Design and methods We prospectively examined adherence to Lym-X-Sorb™ (LXS), an organized lipid matrix dietary supplementation for patients with cystic fibrosis (CF) and pancreatic insufficiency (PI), over a 12-month period. Adherence for participants aged 5–17 years with CF and PI (N = 109) was monitored monthly via supplement packet counts. Group-based trajectory modeling was employed to examine patterns in adherence behavior over time. Results Four distinct trajectories best characterized adherence in this sample, with 18% of participants demonstrating near perfect adherence, 42% demonstrating good adherence (at or above 80%), 16% demonstrating poor adherence that declined over time, and 24% demonstrating significant non-adherence ( Conclusions Some patients with CF and PI who are prescribed nutritional supplements will require intensive, individualized behavioral intervention to enhance adherence. Identifying patients who will have difficulty adhering to dietary interventions may result in better treatment-to-patient matching and improved adherence promotion efforts. Practice Implications. Assessment of adherence to dietary supplementation over time can identify patients at risk for continued difficulty with self-management and provide opportunities for early intervention.

Background Mobile health (mHealth) apps have the potential to facilitate asthma self-management by including medication reminders, allowing self-monitoring of symptoms, improving access and quality of information communicated with provider, and providing educational resources to patients and parents. Many apps exist for asthma management; however, the extent to which apps include evidence-based behavior change strategies has not been examined. Objective To review the content and quality of mHealth asthma management apps that are available to patients. Methods Asthma apps were identified using a systematic search process. Twenty-three apps were coded for presence or absence of behavior change techniques (BCTs) using the taxonomy of BCTs as defined by Abraham and Michie in 2008. Quality ratings were also determined for each app using the Mobile App Rating Scale (MARS). Results The number of BCTs each app used ranged from 1 to 11 (mean, 4). BCTs that were most commonly used were instruction, behavior-health link, self-monitoring, feedback, teach to use prompts/cues, consequences, and others' approval. Overall app quality based on MARS scores ranged from 2.45 to 4.50 (mean, 3.32). Two apps, Kiss myAsthma and AsthmaMD, used at least 8 BCTs and had high quality ratings. Conclusions Kiss myAsthma and AsthmaMD used at least 8 BCTs and had good quality scores.

Medication nonadherence is a significant health care issue requiring regular behavioral treatment. Lack of sufficient health care resources and patient/family time commitment for weekly treatment are primary barriers to receiving appropriate self-management support. We describe the methodology of the Telehealth Enhancement of Adherence to Medication (TEAM) trial for medication nonadherence in pediatric inflammatory bowel disease (IBD). For this trial, participants 11-18 years of age will be recruited from seven pediatric hospitals and will complete an initial 4-week run in to assess adherence to a daily medication. Those who take less than 90% of their prescribed medication will be randomized. A total of 194 patients with IBD will be randomized to either a telehealth behavioral treatment (TBT) arm or education only (EO) arm. All treatments will be delivered via telehealth video conferencing. The patients will be assessed at baseline, post-treatment, 3, 6, and 12 months. We anticipate that participants in the TBT arm will demonstrate a statistically significant improvement at post-treatment and 3-, 6-, and 12-month follow-up compared to participants in the EO arm for both medication adherence and secondary outcomes (i.e., disease severity, patient quality of life, and health care utilization). If efficacious, the TEAM intervention could be disseminated broadly and reduce health care access barriers so that the patients could receive much needed self-management intervention.

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.

Objectives To examine treatment adherence among children and adolescents with chronic migraine who volunteered to be in a clinical trial using 3 measures: treatment session attendance, therapy homework completion, and preventive medication use by daily diary. Materials and methods Analyses are secondary from a trial of 135 youth aged 10 to 17 years diagnosed with chronic migraine and with a Pediatric Migraine Disability Score over 20. Participants were randomly assigned to cognitive-behavioral therapy plus amitriptyline (CBT+A, N=64) or headache education plus amitriptyline (HE+A, N=71). Therapists recorded session attendance. Completion of homework/practice between sessions was reported to therapists by patients. Patients reported preventive medication adherence using a daily headache diary. Results Mean session attendance adherence out of 10 treatment sessions was 95% for CBT+A and 99% for HE+A. CBT+A participants reported completing a mean of 90% of home practice of CBT skills between the 10 sessions. Participants reported taking amitriptyline daily at a mean level of 90% when missing diaries were excluded and 79% when missing diaries were considered as missed doses of medication. Discussion Our findings demonstrate that youth with chronic migraine who agree to be a part of a clinical trial do quite well at attending therapy sessions, and report that they are adherent to completing home/practice between sessions and taking medication. These results lend further support to consideration of CBT+A as a first-line treatment for youth with chronic migraine and suggest that measurement of adherence when this treatment is provided in practice will be important.

Adolescents with IBD are at risk for depressive symptoms and lower HRQOL. The association of adolescent and parent depressive symptoms with adolescent HRQOL is examined while controlling for disease activity. Adolescents (N = 86) and their caregivers completed measures of depressive symptoms. Adolescents completed an IBD-specific HRQOL measure. Parent depression significantly moderated the relation between adolescent-reported depressive symptoms and HRQOL. HRQOL decreased as adolescent depressive symptoms increased. This relation was only significant among adolescents with parents reporting higher depressive symptoms. Adolescent depressive symptoms are associated with lower HRQOL. The presence of parent depressive symptoms intensifies this relation.

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.

Inflammatory bowel disease (IBD) is a chronic idiopathic disease characterized by an unpredictable course that includes intermittent periods of symptom exacerbation and remission. In addition to coping with the uncertainties of their disease, youth with IBD are responsible for managing a complex and potentially burdensome treatment regimen that is sometimes associated with negative side effects.1,2 Collectively, these factors place youth with IBD at increased risk for emotional and behavioral problems,3,4 which in turn have been associated with medication nonadherence in adolescents5 and poor disease outcomes, including increased relapses and disease activity, in adults with IBD.6,7 Thus, identifying patients at risk for experiencing psychosocial difficulties is critical in preventing adverse outcomes; yet the implementation of screening measures into standard clinical practice remains a challenge. One measure of psychosocial adjustment to chronic illness that has traditionally been conceptualized as an important outcome in adult and pediatric health is health related quality of life (HRQOL), defined as a patient's current perception of functioning across several areas. In addition to its responsiveness to treatment intervention8 and association with disease severity9,10 and barriers to care,11 to name a few, HRQOL has demonstrated its clinical utility in several adult chronic illness populations. For instance, HRQOL predicted mortality and hospitalizations independent of several demographic (e.g., age, gender, socioeconomic status) and comorbid factors (e.g., medication dose, time on dialysis, and body mass index) in a large sample of adults with end-stage renal disease.12 In adults with myocardial infarction, lower physical HRQOL was related to poorer treatment adherence, using both cross-sectional and prospective approaches, even after controlling for depression.13 In one study of pediatric patients on managed care health plans, parent proxy-reported HRQOL predicted healthcare costs over 6, 12, and 24 months.14 Although youth perspective on how their illness impacts daily functioning and HRQOL is the preferred method, parent proxy-reported HRQOL is a vital and valid estimate of youth HRQOL when the child is either unable to participate in the evaluation or the validity of his responses is in question.15 In addition to its predictive utility which has seldom been examined, HRQOL is an advantageous clinical tool because a large proportion of youth with chronic illness present with sub-clinical levels of depression but significant functional impairment in important life domains.16,17 This is particularly concerning given that poor HRQOL is related to increased school/work absenteeism, lower standardized achievement and intelligence testing scores, and work productivity loss.18-21 Without HRQOL screening, a subgroup of patients may be overlooked and not receive the necessary resources or referrals for additional services (e.g., psychological, education specialists, social services). Taken together, these findings support the need for screening youth HRQOL during clinic visits in order to identify those at risk for further psychosocial difficulties and poor disease outcomes. To our knowledge, few studies have examined the relationship between HRQOL and clinical outcomes,12,13,22 and only one included a pediatric sample14; however, that study did not evaluate youth-reported HRQOL and included costs accrued as the sole measure of healthcare utilization. The current study advances the existing literature by examining the clinical utility of youth and parent proxy-reported HRQOL in predicting disease severity and healthcare utilization in a sample of youth with IBD. Specifically, lower HRQOL was hypothesized to predict higher physician-rated disease severity at baseline and increased healthcare utilization, including more IBD-related hospital admissions, Emergency Department (ED) visits, phone calls to the provider, psychological services, GI clinic visits, and referrals for pain management over the next 12 months.

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.

Objective To document current clinical practices for medical regimen adherence assessment and intervention in the field of pediatric psychology. Methods 113 members of the Society of Pediatric Psychology completed an anonymous online survey that assessed use of adherence assessments and interventions in clinical practice, barriers and facilitators to their use, and preferred resources for obtaining information on adherence assessments and interventions. Results Respondents reported using a range of adherence assessment and intervention strategies, some of which are evidence-based. Barriers to implementing these clinical strategies included time constraints and lack of familiarity with available clinical tools. Respondents reported that education about effective clinical tools would facilitate their use of adherence assessments and interventions. Conclusions Future research and clinical efforts in adherence should consider developing practical tools for clinical practice, making accessible resources to promote dissemination of these tools, and increase understanding of clinician implementation of adherence assessments and interventions.

Nonadherence to treatment regimens is a major healthcare issue in the USA. There are numerous consequences to treatment nonadherence, including increased morbidity and mortality, additional complexity of clinical decision making by clinicians [1], and increased burden on the healthcare system, with an additional $100–300 billion in healthcare costs [2,3]. Medication adherence in pediatric chronic conditions is particularly challenging, with nonadherence prevalence rates ranging from 50% in children [1] to 65–88% in adolescents [4,5]. Indeed, in adolescents with inflammatory bowel disease (IBD), the prevalence of medication nonadherence is 64% for immunomodulator therapy and 88% for mesalamine; the frequency of nonadherence (i.e. % of missed doses) is 38% for immunomodulators and 49% for mesalamine [5]. Moreover, there is evidence that IBD patients who are nonadherent to medications are 5.5 times more likely to relapse than those who are adherent [6]. Treatment of nonadherence in IBD is still nascent, although the available data suggest that behavioral interventions are promising and efficacious. We recently conducted a randomized-controlled trial of a group-based behavioral intervention to improve medication adherence in adolescents with IBD in which we observed a significant improvement in adherence over a 6-week treatment period (δ = 0.79) [7]. Using similar intervention components (e.g. behavior modification, problem-solving skills training, adherence monitoring), we tested an individually tailored treatment for nonadherence in adolescents with IBD to target family-specific barriers to treatment adherence. The results of this trial showed that treatment resulted in a 25% increase in medication adherence from baseline to after treatment (δ = 0.57) [8]. Thus, both group-based and individually tailored treatment approaches showed initial efficacy. However, both approaches also required weekly face-to-face visits for families, and these visits often occurred after school in the evenings. Consequently, ratings by both patients and parents for convenience of treatment were low in both trials. That is, although the treatment was beneficial, traveling each week to receive treatment was burdensome for patients and families. To address this significant barrier to treatment engagement, we piloted a telehealth approach to delivery of the individually tailored multicomponent treatment protocol we had previously used [8] to treat medication nonadherence. This manualized protocol targeted educational, organizational, behavioral, and family psychosocial factors related to adherence. Our primary aim was to pilot test the feasibility, acceptability, and preliminary efficacy of this telehealth-based treatment approach and report data on cost savings of this model. Although we did not anticipate statistical significance of our findings, given the small sample size, we hypothesized medium effect sizes for improvement in medication adherence from baseline to after treatment, consistent with what we observed in the face-to-face trial. We further hypothesized that the treatment would show feasibility through treatment session attendance and acceptability, particularly in terms of convenience of treatment, through patient and parent ratings.

OBJECTIVE To pilot test the feasibility and acceptability of a family-based group behavioral intervention and to improve medication adherence in adolescents diagnosed with inflammatory bowel disease. METHODS Participants were 40 adolescents aged 11-18 years diagnosed with inflammatory bowel disease and their primary caregivers, who were randomized to either a four-session Family-Based Group Behavioral Treatment or Usual Care over a 6-week period. Adherence was measured using a multi-method, multi-informant assessment involving caregiver-report and patient-report, pill count data, and electronic monitoring. RESULTS Adherence rates ranged from 66 to 89% for 6-mercaptopurine/azathioprine and 51 to 93% for mesalamine across assessment methods. The intervention was feasible, as evidenced by the 99% treatment session attendance rate, and acceptable based on patient and caregiver report. Repeated measures analysis of variance tests revealed nonsignificant differences between the conditions from baseline to post-treatment assessments for pill count, electronic monitor, and primary caregiver-reported adherence (P's>0.05). There was a statistically significant improvement in patient-reported mesalamine adherence represented by a significant main effect for Condition (F=22.24, P

Objective Examine treatment adherence rates in pediatric eosinophilic gastrointestinal disorders (EGID). Methods Participants were children aged 2.5–18 years with eosinophilic esophagitis or eosinophilic gastroenteritis (EGE) and their caregivers. A multimethod, multi-informant assessment including parent report and electronic monitoring was utilized, with a 90% cut point for nonadherence. Results Medication nonadherence prevalence was 30%. Adherence frequency was 91% ± 14% (0–100%) per parent report and 100% ± 69% (0–194%) per electronic monitors. Tube-feeding adherence was 99% ± 3%. Food allergen exposures were less than 1 per 2 weeks, with 33% nonadherence prevalence. Patients with EGE and toddlers with both conditions demonstrated poorer medication adherence (p’s

Crohn’s disease and ulcerative colitis (collectively known as inflammatory bowel disease; IBD) are chronic conditions characterized by uncontrolled intestinal inflammation and periods of disease activity and remission.1 An estimated 20-25% of all IBD cases have an onset in childhood or adolescence,2-3 with a median age at diagnosis of 15 years and an incidence of 71 per 100,000.4 Children and adolescents with IBD must often deal with unpredictable, unpleasant, and potentially embarrassing gastrointestinal symptoms (e.g., abdominal pain, diarrhea, rectal bleeding) in addition to treatment-related side-effects and burden.1 Though treatment of IBD varies by individual case presentation, regimens are often complex and may consist of multiple medication doses per day, dietary modifications, and, in some cases, surgical intervention.5 Though the goal of medical treatment is to minimize symptom activity and disease-related complications, it is clear that IBD and its treatment impact many areas of patient functioning beyond physical health. As such, there is an increasing need to conceptualize patient health more broadly by incorporating assessments of patient emotional and social well-being into treatment decision making and estimates of health outcome. This is especially true given increased focus on improving long-term patient outcomes.6 Health-related quality of life (HRQOL) measures a patient’s perception of their health status and the impact of their illness on their physical, social, and emotional functioning.3 Though HRQOL research in the adult IBD literature has been examined extensively,7-8 there is considerably less inferential research on HRQOL in pediatric IBD. In particular, there is scant evidence regarding predictors of HRQOL in pediatric IBD. Thus, little is known about patient factors that are associated with better or worse quality of life outcome in children and adolescents with IBD. Among the extant research, disease activity has emerged as a consistent predictor of HRQOL in pediatric IBD. Compared to individuals whose symptoms are quiescent or in remission, children/adolescents with greater disease activity report lower levels of HRQOL.3, 6 Though this relationship makes intuitive sense as lowered HRQOL may be due in part to the functional impairment of increased gastrointestinal symptoms and perhaps side-effects of more aggressive treatment to control symptoms, this is a unidimensional conceptualization of HRQOL, which is a multidimensional construct. Disease severity accounts for a relatively small proportion of variance in HRQOL in this population3, suggesting that other factors may contribute to HRQOL. Moreover, research examining the mechanisms through which disease activity impacts HRQOL is greatly needed as this is a poorly understood yet important area of research and clinical care. Indeed, because,other factors that either improve or worsen HRQOL have not yet been identified,9 our ability to design interventions to improve HRQOL and maximize health outcome is limited. Thus, it is imperative that research articulates the relationship between disease activity and HRQOL by examining a broader range of factors related to patient’s quality of life. Because social and emotional factors are significant aspects of overall HRQOL, behavioral dysfunction may explain a portion of the variance in HRQOL. Behavioral dysfunction refers to both internalizing symptoms (e.g., anxiety, depression) and externalizing symptoms (e.g., aggression, disruptive behavior). Several studies have examined rates of behavioral dysfunction in children with IBD and healthy controls. In general, children with IBD are at greater risk of having problems in emotional and behavioral functioning (Mackner et al., 2006) and are rated by their parents as displaying greater levels of internalizing symptoms (e.g., anxiety, depression) than healthy controls.10-11 Although the relationship between behavioral dysfunction and HRQOL has been documented in other chronic illness groups, 12-13 this has not been examined in the pediatric IBD population. Currently, many gaps exist in the research literature with regard to HRQOL in adolescents with IBD. Disease severity only explains a small portion of the variance in HRQOL and little is known regarding other factors that may impact HRQOL or the mechanisms through which disease activity impacts HRQOL. Based on research in other pediatric populations, one potential factor that may increase our understanding of HRQOL outcome in IBD is behavioral dysfunction. To this end, the current study was designed to examine the relationship among behavioral dysfunction and disease activity with HRQOL in a sample of adolescents with IBD. Greater behavioral dysfunction and greater disease severity were hypothesized to predict poorer HRQOL. Furthermore, behavioral dysfunction was expected to mediate the relationship between disease activity and HRQOL.

Background and aims Current research outcomes in paediatric eosinophilic oesophagitis (EoE) are directed towards histological improvement with no attention to health-related quality of life (HRQOL). The primary objective of this study was to identify key patient-reported and parent proxy outcome elements of EoE disease-specific HRQOL. Methods The research team comprised clinical allergists and gastroenterologists with expertise in paediatric EoE as well as two PhD psychologists with extensive experience in qualitative research. Focused interview techniques were adapted from the Pediatric Quality of Life Inventory 4.0™ methodology and the consolidated criteria for reporting qualitative research. A semi-structured interview guide of open-ended questions was developed, and extensive review of audio-taped transcripts was performed. Results A total of 42 focus interviews were conducted. Child self-reports were obtained for patients in the 5–7, 8–12 and 13–18 years of age groups, and parent proxy reports were obtained in the 2–4, 5–7, 8–12 and 13–18 years of age groups. We discovered that patients and parents often had different concerns, illustrating unique aspects of EoE-specific HRQOL that were not captured in generic HRQOL instruments. Specific themes that emerged from these interviews included, but are not limited to: feelings of being different than family and peers, diet and medication adherence, difficulties with eating food and worry about symptoms and illness. Conclusion Paediatric EoE patient and parent proxy interviews revealed many EoE-specific aspects of HRQOL that are not captured in generic HRQOL instruments. Outcome measures that reflect patient- and parent proxy-reported HRQOL are a critical need in paediatric EoE.

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.

Background The psychosocial functioning of caregivers of adolescents managing inflammatory bowel disease (IBD) has been understudied; yet, poor caregiver functioning can place youth at risk for compromised disease management. The current study addressed this limitation by examining a sample of caregivers of adolescents with IBD. Study aims included: 1) document rates of paediatric parenting stress, 2) identify associated sociodemographic predictors of parenting stress, and 3) compare previously published rates of parenting stress to those within other paediatric chronic conditions, including cancer, type 1 diabetes, obesity, sickle cell disease, bladder exstrophy.

The objective of this study was to examine patient- and parent-perceived factors that impact adherence to inflammatory bowel disease treatment using a qualitative descriptive individual interview approach. Sixteen adolescents and their parents were recruited from May through August 2007 and interviewed about medication adherence using an open-ended semi-structured interview format. Interviews were audio recorded, transcribed, and coded into themes. Parent-child dyads identified forgetting, interfering activities, parent-child conflict and oppositional behaviour, and inadequate planning for treatment as challenges to adherence. Participants reported that family support and good parent-child relationships, routines, monitoring and reminding, and organizational tools such as pill boxes facilitated treatment adherence. Other issues that emerged included immediacy of treatment effects and parent-adolescent responsibility for treatment. Patients and parents experience a number of challenges related to adherence within behavioural, educational, organizational, and health belief domains. Behavioural interventions should focus on these issues, reduction of perceived barriers, and effective transition of responsibility for treatment adherence. Future research considerations are discussed.

Background: This study compared youth and parent-proxy reports of health-related quality of life (HRQoL) among youth with inflammatory bowel disease (IBD) to published comparison group data and examined concordance between youth and parent-proxy reports of HRQoL. Methods: One hundred thirty-six youth and parent-proxy reports on the PedsQL 4.0 Generic Core Scales were compared to published data from chronically ill, acutely ill, and healthy comparison groups using independent samples t-tests. Reporter agreement was examined using paired samples t-tests and intraclass correlations (ICCs). Results: Youth with IBD reported lower psychosocial functioning than the healthy comparison group, higher physical and social functioning than the chronically ill group, and lower school functioning than all published comparison groups. Parent-proxy reports of youth HRQoL were higher than the chronically ill group, but lower than the healthy group on all scales except psychosocial functioning. Youth with active IBD reported lower physical health domain scores than youth with inactive disease. Concordance between youth and parent-proxy reports was moderate, with the lowest agreement in school and social functioning. Conclusions: Youth with IBD and their parents rate HRQoL as lower than healthy youth but do not perceive the impact of IBD to be as limiting as in other chronic conditions. Youth report suggests that IBD may be particularly detrimental to HRQoL in the school functioning domain. Moderate agreement between parent and youth reports substantiates continued use of multiple informants in studies of pediatric HRQoL. Inflamm Bowel Dis 2010