Optimizing the Transition and Transfer of Care in Pediatric Inflammatory Bowel Disease.

Health care transition from pediatric to adult care has been identified as a priority in the field of medicine, especially for those with chronic illnesses such as inflammatory bowel disease (IBD). Although there is no universally accepted model of preparing the pediatric patient for transfer to adult care, transition care is best accomplished in a structured and consistent manner. The authors highlight concepts for optimizing the transition of care for patients with IBD, which include setting expectations throughout adolescence with the gradual nurturing of self-management skills, preparing and assessing of readiness for transfer, and enacting a successful transfer to adult care.

Infusion Appointment Self-Management Among Adolescents With Inflammatory Bowel Disease.

OBJECTIVE: Adolescents and young adults with inflammatory bowel disease (IBD) are in vulnerable positions for lapses in care as they transition from pediatric to adult practices. As biologic agents become a mainstay of treatment for these patients, it is important to ensure that responsibility for tasks related to scheduling, remembering, and transporting to infusion appointments for intravenous biologics are mastered prior to transition. This ensures preservation of therapy and disease control. METHODS: We surveyed 236 adolescents and young adults with IBD aged 13-22 years receiving infusion-based biologic therapy at outpatient infusion visits at Boston Children's Hospital from February to May 2021. The questionnaire asked the ideal and actual ages that patients take responsibility for scheduling their infusion appointments, remembering their infusion appointments, and transporting to their infusion appointments. RESULTS: We received 168 completed survey questionnaires. The ideal reported mean age for independence was 17.9 ± 1.7 years across all 3 tasks. Among 80 patients 18 years and older, 44 (55%) were independently scheduling their appointments, 63 (79%) were keeping track of their appointments, and 43 (54%) were getting to their appointments independently. CONCLUSIONS: Adolescent and young adult patients with IBD ideally would independently manage biologic infusion related tasks prior to the age of 18 years, as this is the natural age that many move away from the homes of their parents/guardians. Our study demonstrates that just over half of patients 18 years or older independently manage their infusion appointments. This is an educational opportunity that has implications for health outcomes of patients with IBD.

Contrasting Social Media Use Between Young Adults With Inflammatory Bowel Disease and Type 1 Diabetes: Cross-sectional Study.

BACKGROUND: Social media is used by young adult patients for social connection and self-identification. OBJECTIVE: This study aims to compare the social media habits of young adults with inflammatory bowel disease (IBD) and type 1 diabetes (T1D). METHODS: This is a cross-sectional study of subjects from Boston Children's Hospital outpatient IBD and diabetes clinics. Patients above 18 years of age were invited to complete a brief anonymous survey, which asked about the various ways they use several social media platforms. RESULTS: Responses were received from 108 patients (92.5% response rate), evenly split across disease type. We found that 83% of participants spent at least 30 minutes per day on social media, most commonly on Instagram and Facebook. Although the content varied based on the platform, patients with IBD posted or shared content related to their disease significantly less than those with T1D (23% vs 38%, P=.02). Among Instagram users, patients with IBD were less likely to engage with support groups (22% vs 56%, P=.04). Among Twitter users, patients with IBD were less likely to seek disease information (77% vs 29%, P=.005). Among Facebook users, patients with IBD were less likely to post about research and clinical trials (31% vs 65%, P=.04) or for information seeking (49% vs 87%, P=.003). Patients with IBD were also less likely to share their diagnosis with friends or family in person. CONCLUSIONS: Young adults with IBD were less willing to share their diagnosis and post about or explore the disease on social media compared to those with T1D. This could lead to a sense of isolation and should be further explored.

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.

Validation of the RAISE (Readiness Assessment of Independence for Specialty Encounters) Tool: Provider-Based Transition Evaluation.

PURPOSE: The aim of this study was to establish content validity of a developmentally based assessment tool of readiness for medical independence for specialty providers. DESIGN AND METHODS: The validation process used expert panel evaluation to assess the items believed to measure the desired content in the nine age-based scales within the RAISE (Readiness Assessment of Independence for Specialty Encounters) tool. Experts in child development and transition rated items on relevance, clarity and developmental appropriateness via electronic survey. Statistical analyses included calculation of interrater agreement (IRA), content validity indices (CVIs), and factorial validity indices (FVI). RESULTS: A total of 135 items were rated by 36 experts. Mean I-CVIs for 123 items across nine developmental scales met criteria for retention, ranging from 0.76 (threshold) to 1.00 (excellent). Mean I-CVIs for all 25 items across the five psychosocial stressor scales met criteria for retention, ranging from 0.92 to 1.00 (excellent). CONCLUSIONS: Findings from the current content validation study suggest that items on the revised RAISE tool are relevant, clear, and developmentally-appropriate as rated by experts in the fields of child development and transition. The tool, consisting of age based scales (ages birth-2, 3-4, 5-6, 7-8, 9-11, 12-13, 14-15, 16-17, 18-21), is shown to have content validity of the retained items meeting criteria. PRACTICE IMPLICATIONS: With content validity of the RAISE tool established by experts, this developmentally based assessment tool can be integrated into practice to assist providers in educating patients around skills of medical independence which could improve transition outcomes.

Safety Protocols for Adolescent Substance Use Research in Clinical Settings.

PURPOSE: Research involving adolescent risk behaviors must balance data confidentiality with participant safety when risky behaviors are revealed. This report details a safety protocol and reports the experience of two contemporaneous studies that used it with variant safety thresholds. METHODS: We developed a safety protocol for research with adolescent patients and used it in two concurrent studies of adolescent patients, aged 14-18 years. Study "PC" recruited participants from a primary care adolescent medical clinic (N = 490), and Study "SP" recruited participants from subspecialty pediatric clinics (N = 434); both studies involved a similar self-administered assessment of health behaviors. The protocol sets thresholds for clinical intervention (positive safety flags) for past 3-month heavy alcohol consumption (Study PC: 10 or more drinks and Study SP: "binge-"level drinking), illicit drug use other than marijuana and alcohol in combination with a substance other than marijuana, and sets a positive screen for depression. We examined the rates of positive safety flags in both protocol settings, used significance testing to describe demographic differences between participants with and without positive flags in both studies, and described clinician experiences with protocol implementation. RESULTS: In studies PC/SP, .6%/8.8% of participants were flagged for heavy alcohol consumption, respectively; .2%/0% for illicit drug use, 2.2%/.7% for combination substance use, and 14.9%/4.8% for depression. Some clinicians found managing positive flags challenging, although both studies completed recruitment on time and without serious adverse events. CONCLUSIONS: The protocol was feasible in clinical settings. The findings and experiences documented in this report could be useful for future protocols.

Recommendations for Successful Transition of Adolescents With Inflammatory Bowel Diseases to Adult Care.

Adolescents and young adults diagnosed with inflammatory bowel diseases (IBDs) in pediatric care are vulnerable during their transition to adult care. There are 6 core elements of transition from pediatric to adult IBD care. We identified gaps in this transition and make recommendations for clinical practice and research. There have been few studies of transition policy (core element 1) or studies that tracked and monitored patients through the transition (core element 2). Several studies have assessed transition readiness (core element 3), but instruments for assessment were not validated using important outcomes such as disease control, health care use, adherence, quality of life, or continuity of care. There have been no studies of best practices for transition planning (core element 4), including how to best educate patients and facilitate gradual shifts in responsibility. A small number of longitudinal studies have investigated transfer of care (core element 5), but these were conducted outside of the United States; these studies found mixed results in short- and intermediate-term outcomes after transition completion (core element 6). We discuss what is known about the transition from pediatric to adult care for IBD, make recommendations to improve this process, and identify areas for additional research.

Impact of pediatric inflammatory bowel disease diagnosis on exercise and sports participation: Patient and parent perspectives.

BACKGROUND: Inflammatory bowel disease (IBD) may limit physical activity due to intestinal or extraintestinal manifestations, fatigue, or exercise perception. We sought to evaluate the influence of IBD diagnosis on exercise and sports participation in a pediatric population. We compared patient-reported and parent-reported perspectives. AIM: To evaluate the influence of IBD diagnosis on exercise and sports participation in a pediatric population. METHODS: Consecutive IBD outpatients (aged 10-18 years) and their parents completed parallel voluntary surveys. A validated, patient-reported functional activity scale, the Hospital for Special Surgery Pediatric Functional Activity Brief Scale (HSS Pedi-FABS) was used to assess children's activity levels. RESULTS: There were 149 completed surveys (75% response rate) with mean participant age of 16.5 years [standard deviation (SD) = 4.0] and mean age at IBD diagnosis of 11.8 years (SD = 3.4). Most patients (77%) were diagnosed within 12 mo of symptom onset. Current athletic participation was reported in 65% across 65 sports. Participation was greatest before (40%) rather than after (32%) IBD diagnosis, with no reported change in 28%. IBD negatively impacted play/performance in 45% but did not change play/performance in 44%. IBD treatment improved patients' desire to exercise (70%) and subjective capacity for aerobic exercise (72%). Patients and parents agreed that IBD subjects demonstrate normal capacity for aerobic exercise (0.40, 95%CI: 0.22-0.58) and that treatment improved both participatory desire (0.33, 95%CI: 0.12-0.54) and capacity for aerobic exercise (0.52, 95%CI: 0.31-0.71). Almost all (99%) viewed exercise as healthy, and most encouraged its practice. IBD patients demonstrated normal mean HSS Pedi-FABS scores. CONCLUSION: After pediatric IBD diagnosis, most patients continue exercise and sports, with mean activity levels comparable to American youth. Treatment positively impacts participatory desire and aerobic capacity. Patients favor the role of exercise in IBD.

Screening and Counseling for Alcohol Use in Adolescents With Chronic Medical Conditions in the Ambulatory Setting.

PURPOSE: We seek to determine how youth with chronic medical conditions experience alcohol screening and counseling. METHODS: Adolescents with type I diabetes, juvenile idiopathic arthritis, moderate persistent asthma, cystic fibrosis, attention deficit hyperactivity disorder, or inflammatory bowel disease were surveyed. Descriptive statistics and regression analysis quantified rates of asking and counseling about alcohol. RESULTS: Of 390 participants (75.1% white/non-Hispanic, 51.8% female, average age 16.4 years), 70% reported being asked about their alcohol use by a healthcare provider, and 76% reported receiving at least one message regarding alcohol and health. Of past year drinkers, 54% disclosed use to their provider. Only 2.0% of youth reported receiving the message "I should not drink." CONCLUSIONS: Most youth with chronic medical conditions were asked and counseled about alcohol use although few heard unambiguous recommendations to avoid alcohol consumption.

Sequence of acquisition of self-management skills to follow a gluten-free diet by adults with celiac disease.

BACKGROUND: Celiac disease (CD) treatment is lifelong adherence to a gluten-free diet (GFD), requiring mastery of numerous skills to maintain health. AIMS: To assess the rate of self-management skill acquisition following diagnosis, and the influence of demographic factors on this rate. METHODS: Patients attending a celiac center were invited to complete an anonymous survey which reported demographic information and time for mastery of self-management skills relevant to CD. RESULTS: Completed surveys were returned by 137 patients (79% female). Most participants reported mastering skills that involved identifying gluten-containing versus gluten-free foods within 6 months. Explaining CD and GFD to others required 1-2 years. Identifying gluten in medications and supplements required 3-5 years. Traveling internationally with GFD adherence required more than five years to learn. Demographic factors were not associated with the rate of acquisition. CONCLUSIONS: This is the first description of a timeline for relevant skill acquisition following diagnosis for CD. A sequence emerges, with most patients learning skills relevant to home, then social settings, then the workplace, and, finally, unfamiliar settings. Awareness of this progression of mastery, and particular recognition of difficult skills will allow physicians and dietitians to provide CD patients with targeted education and resources to facilitate adherence.

Use of Social Media for Health-Related Tasks by Adolescents With Inflammatory Bowel Disease: A Step in the Pathway of Transition.

Background: Social media is commonly used among the adolescent and young adult population, including those with chronic diseases. For adults, these platforms have been shown to be a major source of health information. Our aims were to explore how youth with inflammatory bowel disease (IBD) use social media for (1) disease information gathering, (2) provider communication, (3) sense of belonging to the IBD community, (4) self-expression around IBD, and (5) disease management/monitoring. Methods: An anonymous and voluntary survey was administered to IBD patients age 12 to 25 years at a single center over 4 months. Results: Of 218 patients approached, there were 109 respondents. The mean age of the cohort (SD) was 18 (2.9) years, 65% were male, and 82% had Crohn's disease. Almost all patients accessed the Internet daily, but only 17% reported looking up information about IBD "always" or "often." Less than half (47%) turned to medical websites (WebMD or Crohn's and Colitis Foundation) for information. A small number (16%) connected with other IBD patients. Patients' preferred communication with provider was by e-mail (88%) compared with a phone call to the office (67%) or hospital website/patient portal (52%). Few patients used mobile applications to monitor symptoms (2%) or for medication reminders (9%), although there was professed interest. Conclusions: Adolescents and young adults with IBD are less likely than adults to use social media for health-related activities. They prefer e-mail rather than oral communication between visits, and privacy seems to be less of a concern. Targeted education and skill building may be helpful for this transitioning population.

Reality check: What happens when patients with anorectal malformations grow up? A pilot study of medical care transition from the adult patient perspective.

BACKGROUND: There has been an increased focus on transition of pediatric and adolescent patients to adult centered care. For patients with rare and complex conditions, such as anorectal malformations (ARM), difficulties are compounded by the absence of structured transition protocols and lack of adult provider expertise. We sought to explore the actual experiences of adult patients with ARM and distinguish if there are factors that influence the ability to achieve satisfactory transition to adult centered medical care. METHODS: Patients older than 18years with ARM were identified through a hospital database and social support networks, and invited to participate in an anonymous questionnaire. Patients were asked to describe their transition experience as well as report their demographics, and functional outcomes (bowel and bladder function). RESULTS: Twenty-six surveys were completed. Comparison of those respondents (53%) who had transitioned to adult providers to those that had not yet transferred care demonstrated no difference in satisfaction with bowel and bladder function, presence of ostomy, and education level. There was a slight trend for patients with more complex malformations to seek further medical care with adult providers. Of those who transitioned, 67% reported no discussion prior to their transition and 71% received no recommendations for follow-up providers. CONCLUSIONS: This pilot project suggests that a significant number of adult patients with ARM lack transition preparation and fail to find adult providers with expertise. Future studies will need to find optimal ways to address these issues. TYPE OF STUDY: Survey. Retrospective Study LEVELS OF EVIDENCE: Level II.

Creation of Experience-based Celiac Benchmarks: The First Step in Pretransition Self-management Assessment.

OBJECTIVES: Transition planning for children with chronic disease includes the development of independence in many self-management tasks. Conditions that depend on diet have distinct skill sets not well assessed by the traditional transition-readiness tools. There has been literature that describes age-appropriate skill acquisition for diabetes and food allergy patients. There are, however, no age-appropriate benchmarks established for celiac disease (CD). METHODS: CD experts (including physician, nurse, dietician, social worker, patient, and parent) created a list of celiac-related tasks, which formed the basis of the survey. Patients with CD, and their parents, were recruited from outpatient celiac clinic and support groups, and invited to report the age each task was mastered. RESULTS: Respondents included 204 patients and 155 parents. Mean age was 12 years (standard deviation 4.6) with average of 4 years since diagnosis. The earliest tasks were mastered by a median age of 8 years, such as recognizing GF as gluten-free, eating safely in a shared space and recognizing basic unsafe foods. Describing the effects of eating gluten or explaining CD to a friend or stranger occurred around age 10. Asking about gluten-free preparation in a restaurant, and identifying gluten-free medications or vitamins was mastered around age 12, whereas tasks involved with safe domestic travel or assessing risk in a job environment occurred between 14 and 16. The interquartile range was about 4 years for each question. No significant difference seen between patient and parent reports. CONCLUSIONS: This novel patient-centered celiac skill list may improve anticipatory guidance and accelerate self-management skills.

The Transition of the Gastrointestinal Patient from Pediatric to Adult Care.

Transition is the long process of developing independent self-management skills whereas transfer is the actual move from pediatric to adult-centered provider. Structured anticipated transition works best with timelines of tasks to master and discussion of the stylistic differences between pediatric and adult practices. Disease-specific issues need to be addressed, such as earlier timelines for diet-based therapies, parental support for critical illnesses, and differences in therapeutic strategies.

Transition and transfer of childhood cancer survivors to adult care: A national survey of pediatric oncologists.

BACKGROUND: Pediatric oncologists are responsible for ensuring that adolescent and young adult (AYA) childhood cancer survivors have the knowledge and skills necessary to manage their follow-up care in adult healthcare systems. PROCEDURES: To describe transition practices and barriers to transfer, we electronically surveyed U.S. Children's Oncology Group members: 507/1449 responded (35%) and 347/507 (68%) met eligibility criteria. RESULTS: Of 347 respondents, 50% are male, median years in practice 10 (range 5-22), 37% practice in freestanding children's hospitals. Almost all care for survivors up to age 21 years (96%), 42% care for survivors over age 25 years, and only 16% over age 30 years. While 66% of oncologists reported providing transition education to their patients, very few (8%) reported using standardized transition assessments. The most frequent barriers to transfer were perceived attachment to provider (91%), lack of adult providers with cancer survivor expertise (86%), patient's cognitive delay (81%), or unstable social situation (80%). Oncologists who continue to care for patients older than 25 years are more likely to perceive parents' attachment to provider (P = 0.037) and patients' social situation as barriers to transfer (P = 0.044).  Four themes emerged from a content analysis of 75 respondents to the open-ended question inviting comments on transition/transfer practices: desire for flexible transfer criteria; providers as barriers; provider lack of transition knowledge, skills, and resources; and desire for collaboration. CONCLUSIONS: Although most pediatric oncologists reported transferring AYA cancer survivors to adult care and providing some transition education, they endorse deficits in transition skills, emotional readiness, and institutional resources.

The Case-Based Collaborative Learning Peer Observation Worksheet and Compendium: An Evaluation Tool for Flipped Classroom Facilitators.

INTRODUCTION: In a flipped classroom, students learn basic concepts before class, allowing them time during class to apply newly gained knowledge to problem sets and cases. Harvard Medical School (HMS) has introduced a form of flipped classroom, called case-based collaborative learning (CBCL), during preclinical curricula. Finding few published resources, the HMS Academy's Peer Observation of Teaching Interest Group developed a guide for observations and feedback to CBCL facilitators. METHODS: After conducting an extensive literature search, speaking to flipped classroom methodology experts, and observing 14 facilitators using CBCL methods, the interest group identified specific teaching behaviors that optimize student interaction and knowledge application. The group next engaged in several rounds of the modified Delphi method to develop the CBCL peer observation worksheet and compendium and then tested these materials' effectiveness in capturing CBCL teaching behaviors and providing feedback to CBCL faculty facilitators. RESULTS: Seventy-three percent of faculty rated the worksheet and compendium as extremely helpful or helpful in identifying new teaching techniques. Moreover, 90% found the CBCL peer observation and debriefing to be extremely helpful or helpful, and 90% were extremely likely or likely to incorporate peer suggestions in future teaching sessions. DISCUSSION: Medical schools have begun to embrace flipped classroom methods to eliminate passive, lecture-style instruction during the preclinical years of the MD curriculum. This tool identifies specific in-classroom approaches that engage students in active learning, guides peer observers in offering targeted feedback to faculty on teaching strategies, and presents consensus-based resources for use during CBCL faculty development and training.

Twelve tips on writing a discussion case that facilitates teaching and engages learners.

The authors share twelve practical tips on writing a case that engages learners in active learning and discussion. They first advise that, during the initial preparation of the case, authors should (1) identify the case goals and objectives, and (2) identify the level of the learners. When writing the case, authors should (3) use active and colorful language; (4) use patients' own descriptions rather than medical language; (5) allow the learners to interpret data themselves; (6) allow for natural discovery rather than presenting information chronologically; and (7) be realistic about interruptions in patient care. In addition, case authors should pay attention to methods that enhance discussion by (8) creating barriers to diagnostic or treatment options; (9) promoting questions and discussion over answers; (10) using cues to assure discussion flow and knowledge exploration; and (11) omitting details or inserting informational distractors. Finally, well-crafted questions are essential during the case presentation to engage learners in higher-order thinking; and to (12) stimulate curiosity and reflection.

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

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