Search

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.

The objective of this study was to design, code, and test the feasibility, acceptability, and preliminary efficacy of a digital therapeutic self-management tool for pediatric inflammatory bowel disease (IBD). The Self-Management Assistance for Recommended Treatment (SMART) portal development involved an iterative co-design process with a series of focus group/interview sessions with key stakeholders. Subsequently, a pilot, single-arm, open-label trial was conducted with 22 patients; medication adherence was the primary outcome. Usage data for the SMART portal were good, with patients demonstrating better engagement than parents. Results from the trial demonstrated improvement in medication adherence ( M = 24%-31%; t = 7.94, P0.05) and self-management barriers as well as trends in health-related quality of life and symptoms. The SMART portal is a feasible digital therapeutic self-management tool for pediatric IBD that demonstrated preliminary efficacy in this pilot trial. Large, controlled trials are needed to definitively determine the clinical efficacy of this tool.

To examine the feasibility, acceptability, and preliminary efficacy of a technology-assisted stepped-care behavioral intervention to improve adherence in adolescents with asthma. Thirty adolescents (M

This article systematically reviews the empirical literature examining the efficacy of digital headache management interventions for patients with a primary headache disorder.Digital headache management interventions provide opportunities to improve access to behavioral headache interventions to underserved groups.A systematic search of PubMed, Scopus, and EBSCO (PsycInfo, Education Research Complete, ERIC, Health Source: Nursing/Academic Edition, Psychology and Behavioral Sciences Collection) and reference review was conducted. Included studies had to recruit a sample with a primary headache diagnosis, be a randomized controlled trial including a digital component, assess a headache outcome (i.e., frequency, duration, severity, intensity, disability) or quality of life, and be published in English. Two authors independently extracted data for included studies. The methodological quality of studies was assessed using the revised Cochrane risk-of-bias tool.Thirteen studies with unique interventions met inclusion criteria. More than half of the studies were pilots; however, nearly 70% (9/13) demonstrated significant between-group or within-group improvements on one or more headache-related outcomes. All interventions included some form of relaxation training and the majority were delivered via interactive website. While fewer than half the studies report participant race and/or ethnicity, of those that do, 83% (5/6) reported a predominately White/Caucasian sample.Efficacy testing of digital headache interventions is in its infancy with the majority of these studies relying on pilot studies with small samples comprised of homogenous patient populations. Interactive websites were the most common digital medium to deliver digital headache management interventions and have demonstrated promising results. Further testing using large-scale randomized controlled trials and exploration of other digital tools is warranted. Future studies with more diverse samples are needed to inform health equity of digital headache interventions.

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

To quantitatively validate the preintention factors, behavioral intentions, and implementation factors and examine the relationships theorized by the Unified Theory of Behavior Change (UTBC) model among adolescents with attention-deficit/hyperactivity disorder (ADHD).We conducted longitudinal analyses of data from 40 adolescents with ADHD, aged 11 to 15 years old, and their parents, including self-report of UTBC constructs using standardized measures. We collected pharmacy dispensing records for adolescents for the 4 months that followed. We used bivariate correlations to examine relationships between medication continuity, behavioral intentions, preintention factors, and the implementation factors. We conducted paired sample t-tests to compare adolescent and parent responses on UTBC items.Adolescents (mean [standard deviation {SD}] age = 13.3 [1.2] years, 75% male, 77.5% non-Hispanic Black, 90% publicly insured) reported a mean total ADHD symptom score = 29.8/54 (SD = 10.94) and mean total impairment score = 18.7/52 (SD = 10.90) and had a mean percentage of days covered with medicine over 4 months = 0.21 (range = 0-0.97). Adolescent intention to take ADHD medicine every school day was significantly related to adolescents' subsequent medication continuity (r = 0.37, P.05). Adolescent self-concept/image and confidence taking ADHD medicine were the most important factors related to the intention to take ADHD medicine every school day. Adolescents reported less belief and intention to take ADHD medicine and more barriers to taking ADHD medicine compared to their parents.The UTBC model shed light on factors related to subsequent medication use, providing a plausible mechanism for additional research to intervene to promote future medication continuity.

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

OBJECTIVE: Abdominal pain is a common presenting complaint in youth seeking medical care and can be debilitating. Therefore, it is important to understand the impact of pain on functioning using a clinically sensitive approach. In recent years, the National Institutes of Health has established a common core of psychometrically precise measures through the Patient-Reported Outcomes Measurement Information System (PROMIS) initiative. The Pediatric PROMIS-Pain Interference (PPPI) scale was developed to measure pain-related interference, drawing from existing legacy measures. However, its clinical validity has not been thoroughly established in clinical populations. The current study sought to develop clinical cut-points and investigate the validity of the PPPI in a large sample (N = 5,281) of youth presenting to gastroenterological care with abdominal pain symptoms. METHODS: Convergent validity of the PPPI was investigated. Quartile and tertile groupings of the PPPI were calculated and compared to cut-points derived from healthy populations and mixed convenience samples on clinical outcomes via multivariate analyses of variance (MANOVAs). RESULTS: There was good evidence of convergent validity. The tertile solution was superior in classifying different levels of pain-related outcomes as compared to other cut-points. The tertile solution suggested the following PPPI groupings: minimal (≤ 51), moderate (52–59), and severe (≥ 60). DISCUSSION: Results suggest the PPPI is a valid measure with clinically meaningful cut-points to assess pain-related interference in youth with abdominal pain.

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.

Purpose This multi-site study examines patient, parent, and pediatric provider perspectives on what is most important for successful transition. Design and Methods Using the Transition Readiness Assessment Questionnaire, 190 participants recruited from two pediatric IBD centers selected the top five skills they considered “most important for successful transition.” Rankings were summarized and compared by group. Results While patients, parents, and clinicians all identified “calling the doctor about unusual changes in health” and “taking medications correctly and independently” as being important, each stakeholder group qualitatively and statistically differed in terms of transition readiness skills emphasized. Patients endorsed “calling the doctor about unusual changes in health” and “being knowledgeable about insurance coverage,” as being most important to successful transition while parents emphasized health monitoring and problem solving. Pediatric providers emphasized adherence to treatment and reporting unusual changes in health. There were statistically significant differences in endorsement rates across participants for seven transition readiness skills. Patients agreed with providers 80% of the time and with their parents 40% of the time. Parent-provider agreement was 60%. Conclusions Although there was some overlap across groups, areas of emphasis differed by informant. Patients emphasized skills they need to learn, parents emphasized skills they most likely manage for their children, and providers emphasized skills that directly impact their provision of care. Practice Implications Patient, parent, and provider beliefs all need to be considered when developing a comprehensive transition program. Failure to do so may result in programs that do not meet the needs of youth with IBD.

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.

Illness-related parenting stress in parents of adolescents/young adults (AYA) with inflammatory bowel diseases (n = 51) was compared with parents of younger youth (n = 48), using the Pediatric Inventory for Parents. Parents and AYA self-reported psychological functioning. Physicians rated disease activity. Parents of AYA and younger youth experienced comparable levels and types of parenting stress. Parents most commonly endorsed items within the emotional distress domain. Poorer parent psychological functioning explained additional variance in parenting stress beyond that of AYA disease activity and psychological functioning. Parents of AYA with greater disease activity and parents with poorer psychological functioning may benefit from behavioral health involvement.

Objective Treatment adherence is approximately 50% across pediatric conditions. Patient-reported outcomes (PROs) are the most common method of measuring adherence and self-management across research and clinical contexts. The aim of this systematic review is to evaluate adherence and self-management PROs, including measures of adherence behaviors, adherence barriers, disease management skills, and treatment responsibility. Methods Following PRISMA guidelines for systematic reviews, literature searches were performed. Measures meeting inclusion/exclusion criteria were evaluated using Hunsley and Mash’s (2018) criteria for evidence-based assessment across several domains (e.g., internal consistency, interrater reliability, test–retest reliability, content validity, construct validity, validity generalization, treatment sensitivity, and clinical utility). Rating categories were adapted for the present study to include the original categories of adequate, good, and excellent, as well as an additional category of below adequate. Results After screening 172 articles, 50 PROs across a variety of pediatric conditions were reviewed and evaluated. Most measures demonstrated at least adequate content validity (n = 44), internal consistency (n = 34), and validity generalization (n = 45). Findings were mixed regarding interrater reliability, test–retest reliability, and treatment sensitivity. Less than half of the measures (n = 22) exhibited adequate, good, or excellent construct validity. Conclusions Although use of adherence and self-management PROs is widespread across several pediatric conditions, few PROs achieved good or excellent ratings based on rigorous psychometric standards. Validation and replication studies with larger, more diverse samples are needed. Future research should consider the use of emerging technologies to enhance the feasibility of broad implementation.

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.

ObjectiveYouth with inflammatory bowel disease (IBD) often experience difficulties communicating about their disease. It is suspected that the stigmatizing nature of IBD symptoms contributes to youths’ health communication difficulties, leaving youth feeling disconnected from their social environment and potentially resulting in decreased social belongingness and poorer emotional functioning. In this study, we tested an illness stigma → health communication difficulties → thwarted belongingness → depressive symptoms serial mediation model. It was anticipated that youth illness stigma would confer a serial indirect effect on youth depressive symptoms through the sequential effects of stigma on health communication difficulties and thwarted social belongingness.MethodsSeventy-five youth with IBD between the ages of 10 and 18 completed measures of perceived illness stigma, health communication difficulties, thwarted belongingness, and depressive symptoms.ResultsResults indicated a significant illness stigma → thwarted belongingness → depressive symptoms simple mediation path. Importantly, findings also revealed a significant serial mediation path for illness stigma → health communication difficulties → thwarted belongingness → depressive symptoms.ConclusionsYouth who perceive greater IBD stigma appear to experience increased difficulty communicating about their IBD with others, which in turn is associated with feelings of thwarted social belongingness and ultimately elevated depressive symptoms. These findings suggest that difficulty communicating about IBD is one potential route by which illness stigma has a negative impact on youth adjustment outcomes. Results could also inform clinical interventions to address IBD stigma and health communication difficulties associated with the social and emotional challenges in youth with IBD.

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.

OBJECTIVE To present a model of translational research for behavioral science that communicates the role of behavioral research at each phase of translation. METHODS A task force identified gaps in knowledge regarding behavioral translational research processes and made recommendations regarding advancement of knowledge. RESULTS A comprehensive model of translational behavioral research was developed. This model represents T1, T2, and T3 research activities, as well as Phase 1, 2, 3, and 4 clinical trials. Clinical illustrations of translational processes are also offered as support for the model. CONCLUSIONS Behavioral science has struggled with defining a translational research model that effectively articulates each stage of translation and complements biomedical research. Our model defines key activities at each phase of translation from basic discovery to dissemination/implementation. This should be a starting point for communicating the role of behavioral science in translational research and a catalyst for better integration of biomedical and behavioral research.

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.