Outcomes of a Structured Ambulatory Care Health Care Transition Approach in a Large Children's Hospital.

PURPOSE: Without a structured health-care transition (HCT) process, youths with chronic conditions face increased morbidity, care gaps, and dissatisfaction. This article documents the process and outcomes of implementing a standardized approach in a large children's hospital. METHODS: Children's Mercy Kansas City adopted Got Transition's Six Core Elements of Health Care Transition and established a system-wide implementation plan, between 2015 and 2019, involving leadership buy-in, consumer engagement, infrastructure improvements, and quality improvement efforts. Outcomes measured included the number of youths aged 12-21 years receiving transition readiness assessments and participating in goal setting, receiving counseling, and receiving a transfer order, if appropriate. Also, Division-specific process outcome surveys were conducted annually using Got Transition's Current Assessment of HCT Activities. RESULTS: A total of 8,099 unique patients received a structured HCT intervention using the Six Core Element approach over the 5-year period. From 2015 to 2019 the average annual growth was: 207% for completion of transition readiness and goals assessments, 243% for charting of HCT discussions, and 105% for transfer orders. In 2015, 3/20 (15%) divisions were implementing this HCT intervention; in 2019, 17/20 (85%) divisions were implementing it, representing a 467% growth. Division participation in measuring HCT implementation also increased by 89% from 9/20 in 2016 to 17/20 in 2019. The average Current Assessment of HCT Activities scores increased by 35% from 14.55/32 to 19.67/32 during that time. DISCUSSION: This hospital-wide program demonstrates that a standardized HCT process can be successfully implemented in a diverse group of outpatient pediatric primary and subspecialty care settings.

Practice Survey: Depression Screening in Pediatric Inflammatory Bowel Disease.

BACKGROUND: Little is known about depression screening practices in pediatric inflammatory bowel disease (IBD) care. This study summarizes depression screening within IBD centers in the ImproveCareNow Collaborative Network. METHODS: Pediatric IBD providers across 79 IBD centers completed an online survey on current practices surrounding depression screening. RESULTS: Half of centers report doing annual depression screening, largely for patients 12-14 years. The Patient Health Questionnaire (PHQ-9) is most often used. For positive depression screens, most centers refer for evidence-based psychotherapy and/or a psychosocial provider meets with the patient during that visit. Suicidal ideation is addressed by calling a psychosocial provider to clinic or sending a patient to the emergency department. Barriers to routine screening include lack of personnel/resources, billing, and lack of clinic time. CONCLUSIONS: Pediatric IBD centers conducting depression screening provide targeted intervention based on screening and include psychosocial providers in the process. Greater understanding of screening efforts can inform future clinical efforts.

Impact of Perceived Barriers on Patient Engagement and Attitudes towards Transition and Transfer.

OBJECTIVE: This study is a preliminary evaluation of how perceived barriers towards transition might impact patient attitudes towards their own readiness and ability to transition, self-efficacy towards their IBD, and the allocation of treatment responsibility. METHODS: A sample of 81 young adults with IBD were seen for standard care in a Young Adult Clinic (YAC). Patients completed questionnaires on perceived transition barriers; perceived confidence, importance, motivation, and readiness towards transition and transfer; IBD self-efficacy; and allocation of treatment responsibility. Path model analyses were conducted. RESULTS: Not knowing how and who to transfer to and not understanding insurance details were the most commonly endorsed perceived barriers to transition. A significant relationship was found between the attitude toward transition and allocation of treatment responsibility, but no meaningful indirect effects were found from perceived barriers to the allocation of treatment responsibility, using attitudes toward transition as an intervening variable. The relationship between perceived barriers and allocation of treatment responsibility was at least partially explained by examining the intervening effects of attitudes toward transfer and self-efficacy. CONCLUSIONS: The study findings carry important implications for targets of clinical intervention to assist young adults with IBD in engaging in their health care and ultimately transferring into adult care.

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

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

ACG Clinical Report and Recommendations on Transition of Care in Children and Adolescents With Hereditary Polyposis Syndromes.

Transition of care (TOC) in adolescents and young adults (AYAs) with chronic gastrointestinal disorders has received increased attention, especially in those with inflammatory bowel disease. AYAs with hereditary polyposis syndromes are a heterogeneous group of patients with overlapping and complex medical needs. These patients are particularly vulnerable because of the risk of loss of continuity of care and subsequent poor disease outcomes. The Pediatric Committee of the American College of Gastroenterology commissioned a report with recommendations on TOC in AYAs with hereditary polyposis syndromes. This report aims at achieving best practice by both pediatric and adult gastroenterologists despite the paucity of published evidence in this population reflected in the included PRISMA report. Therefore, the group extrapolated findings from the literature related to other chronic gastrointestinal disorders, and a high degree of expert consensus was scored for all recommendations. The report addresses TOC through identifying shared domains followed by specific recommendations in disease management, including models of care, providers and patient and socioeconomic factors relevant to TOC. Areas of strong emphasis include the need for early planning, flexibility in the transition process to maintain continuity during major surgical procedures, patient and family psychological readiness, liaison among team members addressing transition, and changing insurance coverage in this population.

Integrated Multidisciplinary Treatment for Pediatric Inflammatory Bowel Disease.

Inflammatory Bowel Disease (IBD) is a chronic and relapsing inflammatory disorder of the gastrointestinal tract [...].

Transition to Adult IBD Care: A Pilot Multi-Site, Telehealth Hybrid Intervention.

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.

Using a Mixed-method Approach to Develop a Transition Program for Young Adults With Inflammatory Bowel Disease.

BACKGROUND: Although transition guidelines have been specified in pediatric inflammatory bowel disease (IBD), few IBD centers implement these into standard care. We describe a mixed qualitative and quantitative process of developing a needs-based transition program for adolescents and young adults with IBD. METHODS: We enrolled 29 adolescents with IBD, 8 young adults with IBD in adult care, 14 pediatric gastroenterologists, and 58 adult gastroenterologists to provide input into barriers to successful transition, essential patient competencies, and key targets of clinical intervention. RESULTS: The availability and expertise of adult gastroenterologists in childhood-onset IBD were identified by pediatric providers as primary barriers to health care transfer. A medical summary containing pertinent health information was identified by adult providers as instrumental to assume patient care post transfer. Young adults with IBD identified self-advocacy, education on insurance basics, and peer mentoring as essential targets of transition support and preparation in pediatric care. Findings were used to develop educational materials, a portable medical summary, a referral database of adult gastroenterologists, and a young adult clinic geared towards transition planning. CONCLUSION: Involving key patient and provider stakeholders in the development of a transition program is aimed at ensuring that the individual needs of patients and their families are met. Collaboration between pediatric and adult providers is also intended to facilitate a seamless continuum from pediatric to adult health care services. Efforts to evaluate the impact of such programming on self-management in adult care are needed.

Initial Validation of IBD KNOW-IT: Measuring Patient and Caregiver Knowledge of a Child's Disease and Treatment Regimen.

The present study describes the development and initial validation of a newly developed measure of child and caregiver knowledge of the child's own IBD and treatment, called IBD KNOW-IT. One hundred and fifty-five children and their caregivers completed the IBD KNOW-IT as well as a scale designed to compare each dyad's perceived knowledge to their actual knowledge. Initial psychometric evaluation of IBD KNOW-IT was completed by conducting factor analysis and determining internal consistency, convergent validity, and associations with demographic and medical characteristics. Results supported the validity of a 12-item measure with 4 subscales including Symptoms, Medication Regimen, Disease Monitoring, and Medical Team. Support for the internal consistency of IBD KNOW-IT was obtained. Evidence of validity was demonstrated by significant correlations between child and caregiver scales, and high congruence between perceived and actual knowledge across all subscales. The reliability of the measure was demonstrated by good internal consistency and test-retest reliability. Preliminary psychometric evaluation suggests that IBD KNOW-IT is reliable and valid.

#Science: The Potential and the Challenges of Utilizing Social Media and Other Electronic Communication Platforms in Health Care.

Electronic communication is becoming increasingly popular worldwide, as evidenced by its widespread and rapidly growing use. In medicine, however, it remains a novel approach to reach out to patients. Yet, they have the potential for further improving current health care. Electronic platforms could support therapy adherence and communication between physicians and patients. The power of social media as well as other electronic devices can improve adherence as evidenced by the development of the app bant. Additionally, systemic analysis of social media content by Screenome can identify health events not always captured by regular health care. By better identifying these healthcare events we can improve our current healthcare system as we will be able to better tailor to the patients' needs. All these techniques are a valuable component of modern health care and will help us into the future of increasingly digital health care.

Depression Screening in Pediatric Inflammatory Bowel Disease Clinics: Recommendations and a Toolkit for Implementation.

OBJECTIVE: Rates of youth depression are increasing, and approximately 75% of adolescents with depression go unrecognized. Research in pediatric IBD documents increased depression risk, with rates up to 25%, as well as worse adherence and treatment outcomes associated with depressive symptoms. Evidence-based psychological interventions improve the physical and emotional health of these patients, highlighting the importance of detection and treatment. Psychosocial screening has been shown to increase the accurate identification of psychosocial problems and facilitate timely psychosocial intervention. The objective of this article is to establish clinical guidelines for depression screening in youth diagnosed with IBD and to provide resources for implementation. METHODS: The psychosocial screening task force group constituted of psychologists and social workers in the ImproveCareNow (ICN) learning health system reviewed research and clinical guidelines in other fields, and consulted with physicians, nurses, other psychosocial professionals, patients with IBD, and parents of children with IBD in ICN. RESULTS/CONCLUSIONS: It is recommended that adolescents with IBD ages 12 and older be screened for depression annually. Additional practical recommendations for implementation, triage, and treatment within the pediatric gastroenterology clinic are also provided.

Health-Related Quality of Life Predicts Psychology Referral in Youth with Inflammatory Bowel Disease.

PURPOSE: The current study sought to explore psychosocial data gathered from routine screening within an interdisciplinary IBD program, with two-fold aims: 1) to examine parent-child agreement across health-related quality of life domains and 2) to evaluate the differential predictive value of child and parent ratings of health-related quality of life domains on referrals for psychological services. DESIGN AND METHODS: A convenience sample of 92 youth (ages 8-18) and their parents completed the Pediatric Quality of Life Inventory. RESULTS: Children and parents showed moderate to good agreement across health-related quality of life domains. Additionally, regression analyses revealed that child and parent-proxy reports of emotional difficulties, parent report of school difficulties, and child report of physical symptoms were significantly predictive of psychology referral status. CONCLUSIONS: Study findings suggest moderate to good agreement among child and parent-proxy reporters and support the shared value of both child and parent ratings of health-related quality of life in predicting psychology referrals in youth with IBD. PRACTICE IMPLICATIONS: Routine psychosocial screening among youth with IBD can promote the early identification of emotional and behavioral needs, and family receipt of appropriate, evidence-based intervention.

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

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

Practice survey: adherence monitoring and intervention in pediatric gastroenterology and hepatology.

PURPOSE: Despite significant medication nonadherence rates among youth with pediatric gastroenterology and hepatology disorders, little is known about current adherence practices in pediatric gastroenterology care. This study summarizes current practices surrounding adherence monitoring and intervention in pediatric gastrointestinal (GI) and hepatologic care in the USA. PARTICIPANTS AND METHODS: One hundred and fifty-four pediatric GI providers completed an online survey designed to examine current practices surrounding adherence monitoring and intervention, specific strategies used to monitor and treat poor adherence, and the barriers currently experienced in relation to adherence monitoring and intervention. RESULTS: Practices varied greatly in terms of when and how patient adherence is monitored and by whom; however, physicians and nursing professionals take primary responsibility for adherence monitoring. Approximately 25% utilize screeners to assess adherence, and most participants use patient and caregiver reports as a primary measure of adherence. Most participants rated their level of adherence monitoring and intervention as fair to poor. While most participants perceive adherence monitoring to be very important in clinical practice, only 20.8% perceive being able to significantly modify patient adherence. CONCLUSION: There exists great variability in adherence monitoring and intervention practices across pediatric GI providers. Greater understanding of current adherence practices can inform future clinical efforts.

A Pilot Study Evaluating the Impact of an Adherence-promoting Intervention Among Nonadherent Youth With Inflammatory Bowel Disease.

PURPOSE: 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. DESIGN AND METHODS: Medical providers referred twelve adolescents for the intervention, who participated in 4 weekly visits with a caregiver aimed at improving adherence. RESULTS: Intervention session attendance was 100% and the intervention was rated as feasible and acceptable. Mean adherence increased 12% from baseline to post-intervention (p<0.01), and 6% from baseline to 1-month follow-up (p<0.025). A generalized linear model revealed significantly greater adherence from baseline to post-intervention (p<0.001), and from baseline to 1-month follow-up (p<0.01). Logistic Regression revealed a nearly 2:1 odds ratio during post-intervention when compared to the Baseline period (p<0.001). CONCLUSIONS: 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. PRACTICE IMPLICATIONS: 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.

Patient and Caregiver Perspectives on Transition and Transfer.

Little is known about the needs of adolescents with inflammatory bowel disease (IBD) with regard to transition, and how well those needs align with guidelines put forth by the American Academy of Pediatrics (AAP). This study examines perspectives on transition among young IBD patients and their caregivers. Surveys were mailed to 370 adolescent IBD patients, aged 12 years and older, and their caregivers. Most respondents endorsed ages 16 to 17 years as the best age to initiate discussions about transition, and age 18 years or older as the best age to transfer care. Independent self-management by patients was selected as the primary marker of transition readiness, while worry of starting over with a new provider was a primary barrier to successful transfer. Overall, the needs of youth with IBD and their caregivers are largely aligned with AAP best practice recommendations for transition. Further examination into patient needs is essential to inform transition planning efforts and identify targets of intervention.

Current Transition Practices in Pediatric IBD: Findings from a National Survey of Pediatric Providers.

BACKGROUND: Although practice guidelines have been published for transition to adult care among general chronic illness populations and specific to pediatric inflammatory bowel disease (IBD), little is known about current transition practices in IBD care. This study presents data characterizing current transition practices as reported by a national sample of pediatric providers in the United States. METHODS: One hundred forty-one pediatric providers completed an online survey designed to assess current transition practices, barriers and challenges to developing and maintaining transition programming, and desired resources to improve transition services. RESULTS: Practices varied greatly in terms of when providers begin discussing transition and transfer, age at transfer to adult care, and patient supports provided to facilitate transition. Multiple disciplines were often involved in transition programming and 75.9% reported using objective assessment of patient transition readiness. Knowledge and application of published transition practice guidelines was limited, and few respondents reported having a written transition policy at their institution (14.2%). 99.3% of respondents reported barriers to their transition programming efforts. Additional time and instrumental supports were the most common desired resources to support transition efforts. CONCLUSIONS: Variability in IBD transition programming, practices, and policies reflect the emerging nature of clinical practice in this area. Understanding the current state of transition programming can inform future programming. Efforts to identify evidence-based practices in transition to adult care are needed.