Abstract
Background
Adolescents and young adults (AYAs) with inflammatory bowel disease (IBD) face challenges transitioning from pediatric to adult healthcare, where they assume greater responsibility for their care. The Transition Adolescent & Young Adults implementioN (IBD-TrAYN) intervention is part of a multisite hybrid effectiveness-implementation randomized controlled trial launched in 2022 to address gaps in transition care. Online educational modules were developed to enhance disease knowledge and self-management skills among AYAs.
Aim
To explore adult gastroenterologists’ perspectives on transition-related education and curriculum developed as part of the IBD-TrAYN intervention.
Methods
Adult gastroenterologists across Canada with experience treating AYAs with IBD were recruited using purposive and snowball sampling. Three virtual focus groups were conducted with 11 gastroenterologists to explore perspectives on the curriculum. Transcripts were analyzed by 2 independent reviewers using content analysis.
Results
Participants identified the IBD-TrAYN curriculum as a valuable tool for addressing common educational barriers in AYA care. These included provider- and system-level barriers, such as limited clinical time and allied health support, and differences in patient readiness. Priority content included disease knowledge, self-management skills, mental health, and sexual health. Caregiver education was highlighted as an important part of transition care. Suggested improvements included consolidating content, increasing interactivity, and ensuring flexible, self-paced access to support individualized engagement.
Conclusion
Adult gastroenterologists endorsed the value of the IBD-TrAYN curriculum in bridging educational gaps during transition to adult care. Incorporating these insights, particularly prioritizing key topics and enhancing interactivity, may strengthen future iterations and promote effective, patient-centred transition care for AYAs with IBD.
Keywords: IBD, transition of care, education, self-management
Introduction
Transition from pediatric to adult care represents a critical period for adolescents and young adults (AYAs) living with chronic health conditions. It is defined as the purposeful, planned movement from pediatric to adult-oriented healthcare systems and is characterized by a shift from family-centred models to greater autonomy, self-management, and independent communication with healthcare providers.1,2 This reflects a change in the care environment and a developmental shift toward independent management of a complex disease.
Canada has one of the highest global rates of inflammatory bowel disease (IBD), with the incidence of pediatric-onset IBD increasing by approximately 1.27% annually.3 Children and adolescents with IBD often experience more extensive disease, higher inflammatory burden, and a greater risk of complications than adults.4 As youth with IBD transition to adult care, they are expected to independently monitor symptoms, manage medications, and participate in shared decision-making.5 Education therefore plays a central role in preparing AYAs to assume new responsibilities and engage effectively with the adult healthcare system. The Canadian Consensus Statements on transition of AYAs with IBD emphasize structured, developmentally appropriate education as a core component of effective transition care. The statements recommend proactive education for AYAs and their families to support disease knowledge, self-management skills, and readiness for adult care.6
In practice, the transition to adult IBD care can fall short of these ideals. Pediatric and adult gastroenterologists have identified gaps in disease-specific knowledge and self-management readiness at the time of transition, with limited structured tools to support patient education.2,7 As a result, AYAs enter adult care with limited understanding of their diagnosis, treatment history, differences in care practices, and monitoring requirements, despite years of pediatric follow-up.8–11 These gaps highlight the need for educational interventions that equip AYAs with the knowledge, skills, and confidence for successful transition and engagement in adult care.
To address these gaps, we developed the IBD-TrAYN (Transition Adolescent & Young Adults implementatioN) randomized controlled clinical trial (RCT) and launched a hybrid effectiveness and implementation trial in 2021 (NCT05221281).12 This national, multisite initiative aimed to provide evidence for transition interventions that improve outcomes for AYAs with IBD. A component of IBD-TrAYN was 21 online modules that were developed with input from pediatric and adult gastroenterologists, IBD nurse specialists, and patient partners across Canada (Figure 1). Topics covered disease knowledge and health behaviours, with the overarching goal of empowering AYAs to self-manage their condition and engage confidently in adult care. The aim of this quality improvement (QI) project was to explore the perspectives of Canadian adult gastroenterologists on transition-related education for AYAs with IBD and on the educational curriculum developed as part of the IBD-TrAYN intervention.
Figure 1.
IBD-TrAYN Educational Curriculum: 21 Modules.
Methods
Design
This quality improvement project was nested within the IBD-TrAYN multisite type 1 hybrid effectiveness-implementation RCT of a multimodal transition intervention for AYAs with IBD across 3 Canadian tertiary care centres (NCT05221281).12 A qualitative descriptive approach with inductive content analysis was used to explore gastroenterologists’ perspectives on transition-related education and the educational curriculum. Approval was obtained through the Women’s College Hospital Assessment Process for Quality Improvement Projects (APQIP) (APQIP #2023-0063-P).
Recruitment
Eligible participants were English-speaking adult gastroenterologists practicing in Canada with experience managing AYAs (18-25 years old) with IBD. Participants were recruited using purposive and snowball sampling methods to ensure diverse perspectives from community-based practices and tertiary care settings. A total of 37 participants were invited to participate in focus groups by email. Individuals who expressed interest received an informed consent form for completion prior to being scheduled for focus groups. Of these, 12 individuals consented and 11 participated. Recruitment was guided by information power, which emphasizes that sample size adequacy depends on the richness and relevance of data. Recruitment concluded once sufficient information power was achieved to meaningfully address the objectives as determined based on ongoing review of interview transcripts and preliminary thematic analyses.13
Data collection
Demographic information was collected via a pre-survey that was emailed to participants at enrollment. Virtual focus group interviews were conducted during the summer of 2024 by 4 qualitative researchers (A.M., B.A., N.B., and N.F.) using a semistructured interview guide (Appendix S1). The guide was designed to explore gastroenterologists’ perspectives on education for AYAs with IBD during the transition to adult care. Participants were asked to comment on current approaches to transition-related education in clinical practice, strengths and barriers to education delivery, and strengths and limitations of the IBD-TrAYN educational curriculum.
The IBD-TrAYN curriculum comprises of 21 online modules organized into themes of disease knowledge, self-management and health behaviours, psychological well-being, and navigation of adult care. Each module includes written content, embedded videos, and brief knowledge checks. Prior to each focus group, participants received a structured overview of all modules, including learning objectives and content outline, and were given access to the platform for independent review between recruitment and the focus group.
Each focus group lasted 60-90 minutes and included 2-6 participants to facilitate balanced participation and in-depth discussion. Focus groups began with a brief overview of the education topics and modules as a refresher prior to discussion. Sessions were facilitated by an experienced qualitative researcher, with a second team member monitoring the group dynamic. Focus groups were conducted using a secure institutional Zoom account, digitally recorded, transcribed verbatim, and de-identified before analysis. Reflexive journals documented analytic insights, patterns, and reflections on the interview data.14
Data analysis
Transcripts were analyzed using an inductive content analysis approach to identify key patterns and themes.15,16 Interview transcripts were independently reviewed by 2 coders (Z.M. and Y.R.W.). Using an inductive line-by-line coding approach, initial codes were developed using participants’ own language where possible. Bi-weekly meetings were held to consider emerging patterns, refine the coding structure, and consolidate categories. A third team member with qualitative expertise (B.A.) was available to support this process. Data collection and analysis proceeded iteratively until the research team agreed the dataset contained sufficient analytic depth to address the study aims, with later focus groups producing repetition rather than new concepts. Through iterative discussions, codes were organized into broader themes and relationships, which were reviewed collaboratively among the larger team to refine the final thematic framework.
Results
Three virtual focus groups were conducted with 11 adult gastroenterologists from community (n = 3) and tertiary care settings (n = 8) in Canada. Four participants were female and 7 were males. Participants were primarily from Ontario (n = 6) and British Columbia (n = 3), with others from Nova Scotia (n = 1) and Alberta (n = 1). There was a greater predominance of mid-career (≥10 years in practice; n = 8) compared to early-career gastroenterologists (4-10 years; n = 3). All participants treated AYAs in their practice (n = 11). Almost all described seeing 100 or more AYAs in a year (n = 9), with 1 participant seeing over 500. Ten participants had access to at least 1 allied health professional for support. Demographic characteristics of the participants are presented in Table 1.
Table 1.
Participant characteristics (n = 11).
| Values, n (%) | |
|---|---|
| Gender | |
| Female | 4 (36) |
| Male | 7 (64) |
| Years in practice as gastroenterologist | |
| 4-10 years | 3 (27) |
| >10 years | 8 (73) |
| IBD subspeciality training | 11 (100) |
| Practice setting | |
| Community | 3 (27) |
| Academic | 8 (73) |
| Province of practice | |
| Nova Scotia | 1 (9) |
| Ontario | 6 (55) |
| Alberta | 1 (9) |
| British Columbia | 3 (27) |
| AYA (18-30) patients seen per year | |
| <100 | 2 (18) |
| 100-500 | 8 (73) |
| ≥500 | 1 (9) |
| Access to allied health support in practice | |
| Yes | 10 (91) |
| No | 1 (9) |
| Resources used to support AYA | |
| None | 1 |
| Printed brochures | 1 |
| EMR secure messaged | 1 |
| Internet-based resources | 4 |
| IBD nurse or nurse practitioner | 8 |
The major themes identified with separated under 2 domains (Table 2). Domain A captured gastroenterologists’ perceptions of current education practices and gaps, organized into 4 subthemes. Domain B captured gastroenterologists’ feedback on the IBD-TrAYN curriculum organized into 3 subthemes.
Table 2.
Mapping of themes and subthemes.
| Theme | Subtheme | Illustrative quote(s) |
|---|---|---|
| Domain A: Current practice gaps in transition-related education | ||
| Barriers to IBD education delivery | Systemic and resource barriers: Limited clinical time and lack of resources such as allied health constrain provision of comprehensive education. | “I think we in general gastroenterologists probably do a pretty poor job explaining IBD just because of time constraints with clinic visits.” (A01) |
| “I think that most of the time we don’t have time to explain to things and most of time, we will forget about their age.” (A02) | ||
| “I had an IBD nurse in my office. She was seeing many of the patients. Most of the times they would discuss different things than with me. So discuss about fatigue, difficulty in school, anxiety…” (A02) | ||
| “I just feel bad that we don’t have all that time to go through the whole explanation and everything.” (A03) | ||
| “It’s sort of a utopian idea that you have a nurse that you direct the patients to…, it’s not happening in the adult world. It would be nice, but practically challenging.” (A04) | ||
| “It takes 4 or 5 visits over a year or more for us to cover mental health, sleep, resiliency, stomas, family planning… I can’t look at this list… and say that I’ve achieved all of these points with any patient I’ve diagnosed in the last 10 years.” (C02) | ||
| “In the community, there’s a lack of multi-disciplinary care. Dieticians, psychological support… it’s extraordinarily deficient. When you say Google a dietician, they lose faith in you very quickly.“ (C02) | ||
| Communication barriers: Establishing rapport, communicating information, and accessing understanding are challenges by variable health literature of the patient, caregivers, and dependence. | “Most of them will just say, ‘No, no questions at all’ ….is that because [they] don’t feel comfortable enough to speak to or ask questions…or is it because they know their disease”. (A01) | |
| “They think we’re the worst gastroenterologists because they didn’t feel pain during pediatric procedures.” (A01) | ||
| “You’re not able to discuss with the patient, or the [patient] is leaving all the questions to the parent or to the accompanying person.” (A02) | ||
| “There’s so much variability in terms of the level of education people have [re: IBD] …if they come from a pediatric program, they’re often very well versed and well packaged. If they have a family history of IBD, then they’re often more comfortable.” (A04) | ||
| “We tend to address the caregiver more than the patient” (A04) | ||
| Sensitive topics: Topics such as mental and sexual health are often overlooked. | “We don’t spend enough time discussing how patients can navigate relationships while managing their IBD.” (A02) | |
| “If we don’t address the anxiety, it can become a barrier to following treatment plans.” (A03) | ||
| “I find that many of them have very limited tool sets for managing mental health.” (B04) | ||
| “I don’t delve into sexual health. It could be a time thing, a comfort thing. It’s just something that I don’t ask openly until… the patient brings it up” (B05) | ||
| “Mental health tends to be a side point because we don’t have the time or resources to address it properly.” (C02) | ||
| Developmental and life stage: Competing priorities specific to the life-stage and variable maturity impact self-management and engagement in care. | “Sometimes they forget about their appointments because they’re juggling school and other responsibilities.” (A02) | |
| “When the young adults go off to university and they’re living on their own… That’s another transition, not just managing their IBD, but learning how to have a healthy lifestyle and taking care of themselves” (A03) | ||
| “You see them trying to balance everything… friends, classes, jobs… and IBD ends up taking a back seat.” (B01) | ||
| “There’s a huge difference between an 18-year-old who just left home and a 25-year-old who’s been working full-time. Their ability to manage things is completely different.” (C02) | ||
| Domain B: Gastroenterologist feedback on the IBD-TrAYN curriculum | ||
| Perceived value of education curriculum | Standardization: Variation in provider practices and preparation lead to variable patient knowledge and understanding of the system. | “If you’re doing things differently than their pediatric gastroenterologist, there can be push back” (A01) |
| “Not everyone delivers the same information in the same way… To have some resource that every gastroenterologist can direct patients to… would be very important.” (A04) | ||
| “They almost universally come to us on a biologic. I have almost never started one on the transition patient myself….so they tend to know about the biologic world and about treat to target and about their disease when they come to us.” (B02) | ||
| “So it’s sort of a frustrating process to suddenly take over care from somebody who has had 5 to 10 years of active disease, not started on a biologic and then my 1st or sometimes 2nd conversation, I’m basically starting a biologic.” (B04). | ||
| “ We give them websites, we print things, we email them, but it’s haphazard.” (C02) | ||
| Accessibility and flexibility: Independent review and access to materials supports learning at own pace. | “ That’s why I found all these modules very helpful. They touch on things that most of the times we don’t even discuss in the office, like mental health and even diet. If they don’t bring up the diet, we will not have that discussion.” (A02) | |
| “It’s something I can easily refer patients to when there isn’t enough time to go through everything in person.” (C02) | ||
| Core educational topics | Disease basics (IBD 101): Foundational knowledge of disease, symptoms, treatments including medication and surgeries. | “The top 5 things that you could be doing…medication adherence, doing your regular blood work and knowing that it’s important to have more objective monitors of disease activity rather than just symptoms alone.” (A01) |
| “There should be another module touching on the basics of the disease… Sometimes they might have rectal bleeding… or losing weight, or losing their appetite, and they don’t understand these might be significant symptoms.” (A02) | ||
| “The more they understand their condition, the more confident they become in managing it.” (A02) | ||
| “Patients ask why they should continue taking medications if they feel fine.” (A03) | ||
| Mental health: Addressing anxiety, depression, and coping skills as a factor in treatment adherence and quality of life. | “If you throw any mental health issues, then it can be near impossible…, adherence to medications, appointments, testing that can all be very, very challenging” (A01). | |
| “If we don’t address the anxiety, it can become a barrier to following treatment plans.” (A03) | ||
| “We do not do a good job on addressing [mental health] because we don’t have the tools. It’s hard to manage or bring up something that we ourselves are not familiar with managing.” (A04) | ||
| “I find that many of them have very limited tool sets for managing mental health.” (B04) | ||
| “Mental health tends to be a side point because we don’t have the time or resources to address it properly.” (C02) | ||
| Sexual health and body image: Relationships and fertility with IBD are important to life planning and quality of life. | “We don’t spend enough time discussing how patients can navigate relationships while managing their IBD.” (A02) | |
| “Body image is a common issue among young adults with IBD, especially when it comes to romantic relationships.” (A04) | ||
| “I don’t delve into sexual health. It could be a time thing or a comfort thing. It’s just something that I don’t ask openly until… the patient brings it up.” (B05) | ||
| Self-management and resilience: Confidence, organization, and self-advocacy foster engagement and capacity to adapt. | “As young adults are beginning to assume their own care and be less reliant on their parents, they often need a plan like what happens if I’m developing symptoms. When should I go to the emergency department? Do I have an action plan in place? How do physicians monitor your disease activity and what things can you do to help ensure that your disease stays on track” (A01) | |
| “When patients feel confident in their care, they manage their condition much more effectively.” (A03) | ||
| “Patients who are confident in advocating for themselves tend to stick to their treatment plans.” (B01) | ||
| Future directions | Simplification and prioritization: Focus on high-yield topics to avoid information overload. | “It’s a lot of material so that kind of worries me ... but it may be patient dependent where there’s certain patients that want as much information as they can get and for them, this might be fantastic. Others just need the top most important things.” (A01) |
| “Focus on high over low-priority topics so patients don’t get lost in all the details.” (A04) | ||
| “You need resources that can be used differently for each patient—some are ready to take on more, and others are still learning the basics.” (B01) | ||
| Interactive features: Use of videos, visuals, and quizzes to enhance engagement. | “Using short videos, visuals, or even interactive tools would make it easier for young adults to stay engaged.” (B04) | |
| Caregiver inclusion: Parents play important roles and need tailored guidance. | “There needs to be consideration of the transition for the parent as much as there is for the patient… early on before they leave the children’s environment.” (B03) | |
| “Parents are such a key part of this… they can be a real impediment to the process, or they can be very, very helpful.” (B04) | ||
| “There could be a parent module to help them understand how to support their child’s autonomy.” (C02) | ||
Domain A: current practice gaps in transition-related education
Systemic and resource barriers
Time limitations were consistently cited as a barrier to education delivery in the clinic setting (A01, A02, and A03). Participants described clinic appointments as brief, primarily focused on disease management, leaving little time to address topics such as mental health, nutrition, lifestyle, or reproductive health (C02). In the absence of dedicated transition clinics, participants reported distributing teaching across multiple visits. They described the variability, depth and scope of education provided. Limited access to allied health professionals, such as dietitians, psychologists, and IBD nurse specialists, was reported as a barrier, particularly outside of academic centres. Participants described multidisciplinary support as “extraordinarily deficient” and relied on ad hoc strategies such as printed materials and online searches to supplement patient education (C02).
Communication barriers
Participants described that variability in patient engagement, comfort levels, and health literacy makes it challenging to gauge patient understanding of their disease (A04). Participants observed that many AYAs were hesitant to ask questions or share concerns regarding their health during clinic visits, which they attributed to embarrassment, distrust, or dependence on caregivers (A01). Several reported directing explanations to caregivers rather than patients, particularly when caregivers were present (A02 and A04). Participants also described challenges related to establishing rapport and managing resistance to changes in medical therapy, which they attributed to prior care experiences and differing expectations entering adult care.
Sensitive topics
Participants named mental health, sexual health, and body image as important areas of care that were infrequently addressed in clinical encounters (B04). Many described feeling constrained by time, discomfort, or uncertainty about how to approach these topics (B05). They reported that such discussions were often deprioritized in favour of immediate medical concerns and typically occurred only when patients raised them directly. Topics related to sexual health, including fertility, contraception, and intimacy, were described as particular areas of discomfort, with some physicians hesitant to initiate discussions due to uncertainty around timing, perceived sensitivity, or lack of training (A02). Several also noted the limited availability of structured educational resources or psychosocial supports to address these topics (B04 and C02).
Developmental and life stage
Participants described the transition period as coinciding with a life stage characterized by competing priorities, including academic demands, social relationships, employment, and lifestyle changes (A03 and B01). They reported that, as parental oversight decreased, some young adults placed less emphasis on health management, which they associated with inconsistent engagement in care (A02). They described observations of delayed symptom reporting, missed medication doses, and gaps in patients’ understanding of disease triggers during this period. Participants also noted variability in AYAs’ readiness for self-management (C02). While some patients were described as confident and independent in managing their care, others were reported as reliant on caregivers for appointment scheduling, medication organization, and communication with the healthcare team. Participants described these differences in readiness in relation to family involvement, individual characteristics, and prior preparation within pediatric care settings.
Domain B: gastroenterologist feedback on the IBD-TrAYN curriculum
Perceived value of education curriculum
Participants emphasized the importance of a structured approach to education for young adults with IBD. They noted that educational practices differed in content, depth, and format, and described variability in patients’ understanding of their condition and preparedness for transition (A01, A04, and B02). They described variation in how disease-related information was delivered across providers, healthcare centres, and between pediatric and adult care settings (A01 and B04). Participants also expressed support for a centralized, evidence-based educational resource that could be used across regions and practice settings. Several described such a resource as a way to provide more consistent information to patients. Current educational approaches were described as fragmented, with participants reporting reliance on printed materials, verbal explanations, and internet resources shared during clinic visits (C02). Participants described the modules as addressing topics that were not routinely covered during clinical encounters (A02). They noted the value of materials that patients could review independently and revisit over time, depending on their level of readiness and understanding (C02).
Core educational topics
Participants prioritized modules on disease knowledge, mental health, sexual health, and disease self-management as essential components of an educational curriculum for AYAs with IBD.
Disease knowledge
Participants emphasized the importance of foundational knowledge about IBD, including disease pathophysiology, symptom recognition, medication uses, and surgical considerations such as stomas (A02). Participants described encountering patients who lacked a clear understanding of their chronic diagnosis or the rationale for ongoing treatment, even after prolonged engagement in pediatric care (A03).
Mental health
Mental health was consistently identified as an important topic. Participants described anxiety, depression, and emotional distress as common among AYAs with IBD, but they noted that these issues were not routinely discussed in depth during clinic visits (A03). Several participants reported that patients appeared to have limited coping strategies for managing the psychological impact of their disease, and that they themselves had few resources available to offer support in this area (B04 and C02).
Sexual health
Participants identified sexual health as an area that was infrequently addressed in clinical practice (A02). Participants noted that issues related to relationships, family planning, and body image were particularly relevant for young adults with IBD (A04). However, discussions were deferred, often due to limited time, participant discomfort, or uncertainty about patient readiness (B05).
Self-management and resilience
Participants described self-management and resilience as important skills during transition (A01). They reported that patients who demonstrated confidence, organization, and self-advocacy were more engaged in their care (A03 and B01). Participants also noted that competing demands, such as academic and social commitments, commonly interfered with patients’ ability to prioritize health-related tasks.
Content delivery and future directions
Participants suggested simplifying content to focus on high-priority topics and avoid overwhelming patients (A04). They described the value of flexible content that patients could explore as needed and that providers could reference selectively during clinical encounters (B01) (Figure 2). Participants also identified interactive and multimedia elements, such as videos, quizzes, and visual aids, as valuable features to support engagement (B04). Some suggested that mobile access or integration with social media platforms could better align content delivery with how young adults typically consume information.
Figure 2.
Priorities for refinement of IBD-TrAYN Educational Curriculum.
Several gastroenterologists recommended expanding the curriculum to include modules for caregivers and families, as well as additional topics such as travel and medication management (B03, B04, and C02). Participants also described interest in incorporating mechanisms to evaluate the curriculum’s use or impact, including metrics such as appointment attendance.
Discussion
Using qualitative research methodology, we explored adult gastroenterologists’ perspectives on transition-related education and the IBD-TrAYN curriculum designed to support AYAs with IBD. Our findings echo previously documented barriers to transition education and describe novel contributions, namely adult gastroenterologist appraisal of a structured, transition curriculum with recommendations for its refinement. Gastroenterologists described challenges in delivering comprehensive transition-related education within routine clinical practice. Within this context, gastroenterologists viewed the IBD-TrAYN curriculum as a valuable adjunct to clinical care, offering a structured and accessible approach to addressing educational gaps that commonly arise during the transition from pediatric to adult care.
Gastroenterologists consistently described current transition education as variable across practice settings, shaped by differences in provider time, experience, and access to institutional and allied health resources. Time constraints emerged as the most pervasive challenge, with clinic visits often focused on immediate disease management rather than broader educational or psychosocial needs. As a result, discussions related to mental health, nutrition, lifestyle, and reproductive health were frequently deferred or addressed inconsistently. Limited access to dietitians, mental health providers, and IBD nurse specialists, particularly in community practices, further constrained the ability to deliver comprehensive transition education. In contrast, those practicing in settings with integrated multidisciplinary teams described fewer barriers. These observations are largely confirmatory of prior Canadian and international literature documenting fragment transition processes, particularly outside of tertiary pediatric centres.6,17 Variability in disease knowledge at the time of transition was also commonly noted, consistent with prior literature that highlights gaps in AYA understanding of disease mechanisms, treatments, and monitoring strategies.6,17 The curriculum was therefore viewed not as a replacement for clinical visits, but as a complementary tool that could reinforce and standardize delivery of education regardless of local resources, helping to reduce inequities in transition education.
Across focus groups, gastroenterologists identified a core set of educational priorities for AYAs transitioning to adult care, including disease knowledge, self-management skills, mental health, and sexual health. These domains highlight that effective transition extends beyond disease control to also encompass autonomy, confidence, and psychosocial well-being. Mental health and sexual health emerged as particularly important yet inconsistently addressed areas of transition care. Individuals with IBD experience psychiatric disorders at rates 1.5 to 2 times higher than the general population, with transition-aged youth facing up to a sixfold increased risk of depression.18 Sexual dysfunction is also common but frequently underreported among individuals with IBD, with estimates suggesting that 40%-60% of patients are affected.19 Despite this prevalence, gastroenterologists described these topics as challenging to address during routine visits due to time constraints, discomfort initiating discussions, and limited access to specialized supports. Gastroenterologists interpreted these gaps as having downstream implications for AYAs, noting that unaddressed mental health concerns can negatively influence treatment adherence, symptom perception, and overall engagement in care. This is consistent with literature linking psychological distress in AYAs with IBD to school absences, social isolation, restrictive dietary behaviours, and heightened symptom-related anxiety.19,20 As a result, the inclusion of mental and sexual health content within the curriculum can normalize these discussions, provide shared language for patients and providers, and support ongoing dialogue over time. This supports previous qualitative work demonstrating that AYAs prefer proactive initiation of mental health discussions by IBD providers, underscoring the value of structured tools that normalize these conversations.20
Beyond disease knowledge, self-management capacity emerged as an important determinant of sustained engagement in adult care. Gastroenterologists emphasized the importance of competencies such as medication adherence, symptom monitoring, appointment coordination, and navigation of healthcare systems as responsibility shifts to the AYA. Educational content supporting self-advocacy and communication was viewed as valuable for fostering the language and confidence needed to articulate concerns and engage in shared decision-making. This interpretation aligns with broader chronic disease literature, which identifies communication and self-management capacity as key drivers of engagement and long-term outcomes during transition to adult services.21,22
Gastroenterologists provided feedback on the curriculum, along with recommendations for refinement. Key priorities included maintaining concise content, increasing interactivity, and ensuring flexible access. While prior literature has highlighted AYA preferences for interactive, self-paced learning tools, adult gastroenterologist perspectives on the design and integration of such resources have been less well characterized until now.23 Flexibility was identified as a strength of the platform, allowing AYAs to engage with content according to readiness, learning style, and stage of transition. Many gastroenterologists also advocated for the inclusion of caregiver-focused content, recognizing the evolving role of caregivers and the need to support families during this period. Existing literature in IBD and other chronic diseases suggests that while caregivers play a critical role in support and advocacy, many can experience emotional vulnerability and uncertainty as responsibility shifts to the AYA.24,25
Our work has several limitations. Participants were volunteer, English-speaking gastroenterologists, which may introduce selection bias toward those with an interest in education and transition care. Although gastroenterologists from multiple provinces and practice settings were invited, the final sample was concentrated in Ontario and British Columbia and weighted toward academic centres. This may limit transferability to other regions, including those with different health infrastructures, lower patient volumes, or fewer pediatric-adult interfaces. Given that community settings often have fewer allied health resources, many of the identified gaps and recommendations are likely applicable across contexts. The time constraints reported here may in fact underestimate the challenges in community settings, where curriculum-based supports may be even more valuable. Given their central role in receiving AYAs into adult care, this project focused on adult gastroenterologists and does not capture the perspectives of pediatric gastroenterologists or allied health professionals. These findings therefore reflect a single stakeholder group and may not align with the priorities or experiences of other groups.
Future work should aim to recruit more geographically diverse and community-based stakeholders, triangulate findings across groups, and evaluate the impact on measurable outcomes, such as patient-reported confidence and engagement in care.
Conclusions
Adult gastroenterologists identified the IBD-TrAYN curriculum as a valuable resource for supporting transition-related education among AYAs. The curriculum offers a promising approach to delivering standardized evidence-informed educational content that addresses both medical and psychosocial domains of IBD care. Thoughtful integration into clinical practice, alongside ongoing refinement informed by stakeholder feedback, may enhance its utility and support transition education across diverse care settings.
Supplementary Material
Acknowledgments
We thank Dr Daniel Green, Dr Vivian Huang, Dr Dustin Loomes, Dr Sanjay Murthy, Dr Cynthia Seow, Dr Adam Weizman, and Dr Astrid-Jane Williams, along with the other participating gastroenterologists for generously sharing their time and perspectives. We also acknowledge and are grateful for the contributions of the IBD-TrAYN research team in developing and implementing the transition intervention and supporting study coordination.
List of contributors: Members of the Canadian Children IBD Network Education Committee include Eileen Crowley, Karen Kroeker, Katherine Evans, Zubin Grover, Lara Hart, Daniela M. Isaac, Krista Uusoue, and Thomas D. Walters.
Contributor Information
Zuhal Mohmand, Department of Medicine, Queen’s University, Kingston, ON K7L 2V7, Canada.
Ashleigh Miatello, Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada.
Brooke Allemang, Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada; Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, ON M5S 1V4, Canada.
Aalia Tausif, Crohn’s and Colitis Canada, Toronto, ON M5G 1Y8, Canada.
Yi Ran Wang, Department of Medicine, University of Melbourne, Melbourne, VIC 3010, Australia.
Sally Lawrence, Division of Gastroenterology, Hepatology and Nutrition, BC Children’s Hospital, Vancouver, BC V6H 3N1, Canada; Department of Pediatrics, University of British Columbia, Vancouver, BC V6H 3N1, Canada.
Colette Deslandres, Division of Gastroenterology, Hepatology, and Nutrition, CHU Sainte-Justine, Université de Montréal, Montréal, QC H2X 0C9, Canada.
Melanie Barwick, Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada; Department of Psychiatry, University of TorontoToronto, ON M5S 3G3, Canada; Dalla Lana School of Public Health, University of Toronto, Toronto, ON M5T 3M7, Canada.
Kate Lee, Crohn’s and Colitis Canada, Toronto, ON M5G 1Y8, Canada.
Jacqueline de Guzman, Crohn’s and Colitis Canada, Toronto, ON M5G 1Y8, Canada.
Nancy Fu, Division of Gastroenterology, Department of Medicine, University of British Columbia, Vancouver, BC V5Z 1M9, Canada.
Eric I Benchimol, Child Health Evaluative Sciences, SickKids Research Institute, The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada; Division of Gastroenterology, Hepatology and Nutrition, SickKids Inflammatory Bowel Disease Centre, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada; Department of Paediatrics and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON M5T 3M6, Canada; ICES, Toronto, ON M4N 3M5, Canada.
Natasha Bollegala, Division of Gastroenterology, Women’s College Hospital, Toronto, ON M5S 1B2, Canada; Department of Medicine, University of Toronto, Toronto, ON M5S 3H2, Canada.
Canadian Children IBD Network Education Committee:
Eileen Crowley, Karen Kroeker, Katherine Evans, Zubin Grover, Lara Hart, Daniela M Isaac, Krista Uusoue, and Thomas D Walters
Author contributions
N.B., N.F., and E.I.B. contributed to the conception and design of the work. Data were acquired by A.M., B.A., N.B., and N.F. Data analysis was performed by Y.R.W. and Z.M. Data interpretation was carried out by A.M., A.T., B.A., N.B., N.F., Y.R.W., and Z.M. The manuscript was drafted and reviewed by all authors, and all authors approved the final manuscript.
Supplementary material
Supplementary material is available at Journal of the Canadian Association of Gastroenterology online.
Funding
This study was supported by funding from the Leona M and Harry B Helmsley Charitable Trust, Crohn’s and Colitis Canada, The Canadian Children IBD Network.
Conflicts of interest
Conflict of interest disclosure forms (ICMJE) have been collected for all co-authors and can be accessed as supplementary material.
Data availability
The data underlying this article is available on reasonable request to the corresponding author.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The data underlying this article is available on reasonable request to the corresponding author.