Introduction
The prevalence of inflammatory bowel disease (IBD), a chronic gastrointestinal condition, has been on the rise in recent decades. Notably, 20–25% of all IBD diagnoses occur within the pediatric population [1]. It is important to recognize that the manifestation and progression of IBD in children and adolescents exhibit distinct characteristics compared to adult cases.
One of the main differences between pediatric and adult IBD patients is the severity of the condition. Pediatric patients tend to have more severe symptoms than adults, with a higher prevalence of complications, such as malnutrition, growth failure, delayed puberty, psychosocial issues, and hospitalization [2, 3]. Children often present with more extensive disease, particularly pancolitis in ulcerative colitis, and face a higher risk of complications such as stricturing and internal fistulizing disease. Additionally, they have an increased risk of gastrointestinal cancer, and a threefold higher all-cause mortality risk compared to the general population [2]. The management of IBD also differs between pediatric and adult patients. Pediatric patients often require more intensive medical management, including the use of biologic therapies and hospitalization for an acute severe exacerbation [3].
Treatment is often multi-drug, aimed not only at alleviating symptomatic manifestations but also at facilitating adequate development, particularly growth. Upon achieving remission, it is imperative to maintain effective therapy, as its discontinuation may result in significant deterioration of the patient’s health and subsequent resistance to previously efficacious treatment [4]. Consequently, it is necessary to address the issue of the transition period for young adults with IBD from pediatric to adult care.
Transition care in pediatric IBD involves preparing adolescents for adult healthcare services. This process aims to ensure care continuity, promote self-management, and address unique challenges [5]. It involves medical, psychosocial, and educational aspects, equipping patients with knowledge and tools for independent disease management [6]. Transition care may include joint appointments with adult and pediatric GI, structured education programs, and gradual transfer of responsibility from parents to patients. The goal is to minimize care disruptions, maintain treatment adherence, and support patients in developing confidence and competence in managing IBD in adult health care settings. The need to establish a structured transition program is especially important today, as emerging evidence indicates that the rates of pediatric-onset IBD continue to rise around the world [7].
In general, three basic models of the transition from pediatric to adult care can be distinguished. The ideal model – but most often impossible to implement – involves the creation of centers that combine pediatric and adult teams. The second model involves the gradual transfer of patients and transitional shared care. The third model involves the transfer of medical dossiers only. The latter provides the least care to the patient. Nevertheless, it the most widely used [8].
Bearing all the above in mind is necessary when discussing the crucial time of transition from pediatric to adult care. Currently, several papers discuss the issue of the structured transition process. These include the ECCO practice points in Europe [9]; the Japanese Society for Pediatric Gastroenterology, Hepatology, and Nutrition (JSPGHAN) guidelines for transitioning IBD patients in the Northeast Asian region [10]; recommendations regarding the transition of patients with childhood onset of IBD to adult care published by the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) [11]; and the recent Consensus Guidelines for Australia and New Zealand [12]. Still there are no guidelines or best approaches approved worldwide. This literature review seeks to compile recent evidence on globally recognized needs and effective strategies.
Methods
A digital search of scholarly literature was conducted using Web of Science, Scopus and PubMed databases, focusing on English-language articles published within the past 6 years. The keywords used were ‘‘inflammatory bowel disease’’, ‘‘transitional care’’, ‘‘ulcerative colitis’’, ‘‘Crohn’s disease’’, and “pediatric”. The literature search identified a total of 99 articles, of which 15 were ultimately included based on relevance after reviewing titles and abstracts.
Results
To provide a clearer overview of the available evidence, the identified studies were divided into two categories: Table I summarizes survey-based studies, which capture the perspectives of patients, pediatric, and adult gastroenterologists regarding transition practices, perceived barriers, and suggested improvements [13–20]. Table II presents results from retrospective and prospective observational studies which assessed clinical outcomes after transition to adult care, such as relapse rates, treatment adherence, hospitalization frequency, and clinical remission [21–27].
Table I
Survey-based studies on healthcare providers’ and patients’ perspectives on transition in pediatric IBD
| Article | Aims | Population | Design | Key findings | Country |
|---|---|---|---|---|---|
| Castiglione et al. 2023 [13] | To give an overview of Italy’s transition process and to examine the viewpoints of both pediatric and adult gastroenterologists. | 104 physicians (62 pediatric and 42 adult gastroenterologists) | Online survey | Disease activity was identified as a key element during transition. Pediatric gastroenterologists place a greater emphasis on the age of their patients than adult gastroenterologists. In most situations, the transition was coordinated through one or more joint meetings, with fewer than 25% of the respondents reporting that they engaged other professions during the transition process. | Italy |
| Kaul et al. 2024 [14] | Evaluation using representative IBD Needs Assessment Survey (CEDNA) on needs of patients with IBD and parents. | IBD patients and parents of children and adolescents with IBD (n = 708 parents, n = 450 patients) | CEDNA survey | Patients preferred digital media for obtaining information, while parents favored print media and internet sources. Pediatric gastroenterologists were the most important source of information for both patients and parents. Low health literacy was identified among both patients and parents. | Germany |
| Sánchez Sánchez et al. 2019 [15] | The study aimed to assess the current state of transition in Spain and determine the challenges, necessities, and obstacles to transition from the viewpoints of both pediatric and adult gastroenterologists. | 145 physicians from 90 hospitals, 53% pediatric gastroenterologists (PG) and 47% adult gastroenterologists (AG) | Online survey | Lack of time, organizational support, and space for joint visits were identified as major barriers from the healthcare organization perspective The optimal period for beginning transition is 14 to 16 years old, with the process concluding between 16 and 18 years old. | Spain |
| Vernon-Roberts et al. 2024 [16] | The study aimed to evaluate transition practices for adolescents with inflammatory bowel disease (IBD) from pediatric to adult care in Australasia. | 17 pediatric gastroenterologists completed the survey: Australia 13 (76%), New Zealand 4 (24%) | Online survey | Important factors to consider during transition include the patient’s developmental level, readiness, and disease activity. | Australia and New Zealand |
| Jawaid et al. 2019 [17] | This study aimed to determine the current treatment practices among adult gastroenterologists throughout Canada. | 25 adult gastroenterologists | Online survey | Current transition practices varied widely, with only 40% of participants reporting a formalized IBD transition program at their institution. The study highlighted the need for standardized transition protocols, improved resource allocation, and development of quality indicators to assess and improve transition care for IBD patients in Canada. | Canada |
| Giouleme et al. 2023 [18] | The research sought to determine healthcare professionals’ views on the transition process, as well as their understanding of the necessary elements and obstacles for effective transitional care. | 98 individuals (78 adult and 20 pediatric gastroenterologists) | Online survey | 80% of respondents agreed that adolescents with IBD were often poorly prepared for the transition to adult care. Adult gastroenterologists identified lack of communication and coordination between adult and pediatric gastroenterologists as the main barrier to successful transition (27.7%). The study revealed differences in perceptions between adult and pediatric gastroenterologists regarding transition requirements for young adults with IBD. | Greece |
| Erős et al. 2020 [19] | To examine the current transition practices employed for teenagers with IBD in Hungary. | 4 pediatric and 9 adult IBD centers. | Online survey | There was a notable lack of structured transition programs, with most Hungarian centers simply referring adolescents to adult care. This was the first nationwide survey examining IBD transition practices in Central-Eastern Europe, serving as a basis for planning more effective transition strategies in the future. | Hungary |
| Kumagai et al. 2020 [20] | To compare the views of adult and pediatric gastroenterologists regarding transitional care for patients with childhood-onset IBD. | 29 pediatric gastroenterologists | Online survey | Major barriers to transition included patient emotional instability/cognitive delay and presence of non-IBD diseases. The study highlights the need for tailored transition programs considering practice settings and Japanese healthcare context. | Japan |
Table II
Retrospective and prospective studies assessing clinical outcomes after transition in pediatric IBD
| Article | Aims | Population | Design | Key findings | Country |
|---|---|---|---|---|---|
| Tóbi et al. 2024 [21] | To investigate: the factors contributing to a successful transfer, how the planned transition impacts disease progression and patient adherence, the specific attributes of PIBD patients that require consideration in adult healthcare settings. | The study included 351 patients with PIBD, with 152 transitioning to adult care. The average follow-up duration after transfer was 3 years. Among these patients, 73 underwent a structured transition process, while 79 independently transferred to adult care services. | A multi-year research study spanning from 2001 to 2022, incorporating both retrospective data gathering up to 2018 and subsequent prospective analysis. | Self-transferred patients had a 1.88-fold increased risk of relapse compared to transitioned patients. Transitioned patients spent significantly more time in disease remission compared to self-transferred patients. The study suggests that structured transitional programs play a key role in ensuring the best possible disease outcome for pediatric-onset IBD patients. The research highlights the need for multi-centric transitional studies to guide recommendations and establish a gold-standard transitional and educational method for IBD patients. | Hungary |
| Choukair et al. 2024 [22] | Evaluation of resource use and costs required for the transition process. | 58 adolescents with chronic autoinflammatory and autoimmune disorders. | Prospective cohort study | The authors concluded that given the reasonable costs, sustainable funding for structured transition pathways should be mandatory. | Germany |
| Schütz et al. 2019 [23] | Assess clinical and economic impacts of structured transitional care for young adults with IBD. | 24 patients with and 11 patients without structured transition care. | Retrospective study | Mean expenditures for surgery and hospitalization tended to be lower in the transition group. The study suggested that structured transition can lead to important clinical and economic benefits for adolescents with IBD. | Germany |
| McCartney et al. 2022 [24] | To assess the effects of a structured transition from pediatric to adult IBD care on measurable patient outcomes, including disease exacerbations, hospitalization frequencies, and utilization of healthcare resources. | 129 patients were included: 95 transition patients and 34 non-transition patients. | Retrospective study | In the 12 months after transition: – Transition patients had fewer disease flares (p < 0.05). – More transition patients were steroid-free (71% vs. 41%, p < 0.05). – Transition patients had fewer emergency department visits leading to admission (5% vs. 18%, p < 0.05). Structured transition was associated with positive and cost-neutral outcomes in patients with pediatric-onset IBD. | United Kingdom |
| Yoo et al. 2023 [25] | The objective of this research was to evaluate the clinical features and care transition outcomes among teenage patients with inflammatory bowel disease, comparing them to patients who did not undergo a structured transition. | 242 patients: transition group (n = 29, 12.0%), non-transition group (n = 213, 88.0%). | Retrospective study | The study emphasized the need for individualized transition protocols according to country-specific factors. After transition, IBD-related admission frequency, emergency admission frequency, disease flare frequency, and medical non-compliance significantly improved in transition group. | South Korea |
| Otto et al. 2019 [26] | To assess the impact of our existing transition protocol on health outcomes in young patients with inflammatory bowel conditions. | 45 patients were included: 21 transition patients and 24 non-transition patients. | Retrospective study | At 12 months after transfer, the transition group had a significantly higher remission rate compared to the non-transition group (95% vs. 65%, p = 0.037). | Hungary |
| Rubín de Célix et al. 2023 [27] | The study’s objective was to assess how transition affected outcomes in inflammatory bowel disease (IBD). | 278 patients were included: 185 transition patients and 93 non-transition patients. | Multicenter, retrospective, observational study | The study demonstrated that structured transition improves outcomes for IBD patients transferring to adult care. Patients in the transition group had better clinical outcomes one year after transfer: lower rates of IBD flares (22% vs. 36%), fewer hospitalizations (3% vs. 10%), less corticosteroid use (5% vs. 16%) | Spain |
Discussion
Insights from survey-based studies
In the study by Castiglione et al., the researchers aimed to examine the transition process in Italy by surveying pediatric and adult physicians. The Italian Group for Inflammatory Bowel Diseases (IG-IBD) and the Italian Society of Pediatric Gastroenterology, Hepatology, and Nutrition (SIGENP) conducted an online survey with 104 participants (62 pediatric and 42 adult gastroenterologists). According to the study, the most significant factor in the transition process was considered to be the disease activity. Moreover, pediatric gastroenterologists considered patient age more significant than adult gastroenterologists did (p < 0.01). Typically, the transition included one or more joint meetings. Less than 25% of the respondents involved other professionals during the transition. Pediatric gastroenterologists viewed the struggle to leave the pediatric environment and the attending physician as more critical than their adult counterparts. The survey highlighted the need to integrate transitional care into healthcare policies in Italy [13].
The complexity of the transition process in pediatric patients raises many questions. A study conducted this year in Germany by Kaul et al. analyzed data from 1158 questionnaires collected from 708 parents and 450 from patients [14]. The study showed that health literacy among children with IBD was low; in particular, patients aged 16–17 years showed the greatest need for knowledge regarding transition to adult care. In this study, the authors found that parents indicated different prioritization of information on the disease throughout the years. Information on general IBD topics (67.6%), causes (63.2%), and nutrition (49.8%) was most needed at the time of diagnosis. As the disease progressed, parents prioritized information on the transition to adult healthcare (84.2%), sexuality (70.5%), and family planning (69.7%). This finding led the authors to conclude that tailoring information to patients age and time since diagnosis could improve health literacy and disease management and reduce family burden. Another interesting observation was that there was a distinct contrast in how patients and parents sought information about the illness. Patients tended to favor digital platforms, whereas parents were more inclined to use printed materials to gather information. This aligns with findings from numerous studies indicating that teenagers are spending more time online [28].
A notable study was conducted in Spain in 2019. This study aimed to assess the status of transitional care for patients with IBD in Spain and identify the needs and barriers from pediatric and adult gastroenterologists’ perspectives. In the study, 145 physicians from 90 hospitals responded to the survey, of whom 53% were pediatric gastroenterologists (PG) and 47% adult gastroenterologists (AG). Even though 42.2% of responding centers in Spain had developed structured transition programs for IBD patients, many gastroenterologists (58.6% of adult and 41.4% of pediatric gastroenterologists) felt inadequately trained to manage adolescents with chronic diseases. Both groups identified inadequate preparation of adolescents for transfer, particularly in disease knowledge and self-advocacy. The researchers emphasized that inadequate training, limited time, and insufficient resources are the primary obstacles hindering a successful transition [15].
The problems with the lack of a standardized protocol transition are present around the world. A 2024 study by Vernon-Roberts et al. surveyed pediatric gastroenterologists in Australia and New Zealand to assess transition care practices for adolescents with IBD. Most of the of respondents (76%) reported having access to dedicated IBD transition clinics, but practices varied widely across centers. Most healthcare providers (76%) did not utilize any standardized protocols to guide their transition practices. 88% of respondents considered the development of standardized Australasian transition guidelines to be beneficial. The study also highlighted the need for developing and implementing standardized Australasian guidelines for IBD transition care to optimize outcomes for adolescents [16]. Yet another study from Canada provides a similar impression. A survey of 25 adult gastroenterologists was conducted, concerning current pediatric to adult IBD transition practices across Canada. Only 40% of participants reported having a formalized IBD transition policy or program at their institution. Transition practices varied widely, ranging from informal agreements to structured programs with joint appointments and dedicated multidisciplinary teams. Information transfer practices varied, with most centers using summary letters from pediatricians and some having shared electronic medical records. Sixteen out of 17 interviewees agreed that a consensus-based expert position statement on transition practices would be helpful [17].
The lack of internationally acknowledged guidelines is also apparent in a 2023 study from Greece. Of the 78 adult and 20 pediatric gastroenterologists, 42.9% of respondents believed there was no collaboration between adult and pediatric gastroenterologists. The main barriers to transition were identified as differences in follow-up between pediatric and adult clinics, lack of communication between specialists, and patient/family reluctance to leave pediatric care [18].
Another survey, conducted in Hungary, revealed that only 15.4% of IBD treatment centers use international guidelines for transitioning patients from pediatric to adult care. Most centers offer support during the transition process, but these services vary widely. Joint visits occur in only 54% of clinics. Education for gastroenterologists and patients’ families about the transition is rarely provided. Although teenagers receive age-appropriate education, their readiness for transition is not assessed [19].
The study by Kumagai et al. surveyed 29 representative members of the Japanese Society for Pediatric Gastroenterology, Hepatology and Nutrition regarding transitional care for patients with IBD. 58.6% reported experiencing some degree of difficulty in referrals. The majority viewed 18–22 years as the ideal age for transfer. Key factors for successful transition included providing a medical summary before the first adult visit and patients’ knowledge of their medical history and medications. Barriers to transition included patients’ emotional instability/cognitive delay and having diseases other than IBD. Practice setting influenced responses, with municipal hospital physicians rating lack of manpower and time as more significant issues compared to those in children’s hospitals [20].
Insights from retrospective and prospective studies
The study by Tóbi et al., which analyzed multiyear data, provides valuable insights into transition care. Patients who took part in structured transition to adult care demonstrated lower disease activity, fewer relapses, better medication adherence, and lower loss-to-follow-up rates. Another interesting finding is that female sex is a risk factor for discontinuing care during the transition period. In addition, further benefits of participating in the program have been identified: self-transferred patients had a 1.88-fold increased risk of relapse compared to transitioned patients. Transitioned patients spent significantly more time in disease remission compared to self-transferred patients. The study found no significant difference in hospitalization or surgery rates between transitioned and self-transferred patients. The research also suggests that structured transitional programs play a key role in ensuring the best possible disease outcome for pediatric inflammatory bowel disease (PIBD patients) [21]. A retrospective study by Otto et al. supports these findings. At 12 months after transfer, the transition group had a significantly higher remission rate compared to patients without structured transition (95% vs. 65%, p = 0.037) [26]. A study from the national IBD society of Spain (GETECCU) also provided clear evidence on the benefits of a structured transition program. The study analyzed 278 patients from 34 Spanish hospitals, with 185 (67%) undergoing structured transition. Patients in the transition group had better clinical outcomes 1 year after transfer: lower rates of IBD flares (22% vs. 36%), fewer hospitalizations (3% vs. 10%), less corticosteroid use (5% vs. 16%). Factors associated with poor clinical outcomes were also specified: lack of structured transition, active IBD at transfer, BMI < 18.5 kg/m2 at transfer, corticosteroid treatment at transfer. It is also noteworthy that 65% of participating hospitals had implemented structured transition programs [27].
A recent study from 2024 by Choukair et al. provided another perspective on transition care, as it evaluated a structured transition pathway for patients with chronic autoinflammatory and autoimmune disorders, focusing on resource utilization and costs. While the study had some limitations – the costs of the process are valid only in Germany, and the time and group of the study were limited – it still provided the valuable information that the costs are reasonable, in comparison with the possibility of additional inpatient care in the hospital [22]. Another study supporting this statement, by Schütz et al., took into consideration socioeconomic outcomes of structured transition care for adolescents with IBD. The study found that mean expenditures for surgery and hospitalization tended to be lower in the transition group in comparison to the patients without structured transition care (€744 vs. €2,691, p = 0.050) [23]. In comparison, a 2022 study conducted in the United Kingdom showed that total mean estimated costs were similar between the two groups (£1644.22 for transition vs. £1827.32 for non-transition, p = 0.21) [24].
Local and cultural needs in transitional programs
Another important aspect of a structured transition program is that, as some studies have shown, it also needs to take into consideration the needs of the local population [28]. Some studies have shown that age was positively associated with skills including disease knowledge and performing self-management behaviors [29]. As shown in a study from South Korea, in contrast to Western nations, significant life milestones such as achieving financial autonomy and leaving the family home typically occur later in East Asian societies. Because of that, young people in Asian countries are believed to rely more heavily on their parents when making important decisions, which may influence the right age of transition for this population. Still, the research indicates that following transition, there were substantial improvements in both disease exacerbations and adherence to medical treatment [25]. The study by Park et al. also indicated that tailored programs should be established based on each hospital’s competencies and size, rather than strictly following the structure of larger centers [30].
Global challenges and benefits of structured transition programs in IBD
Transition care for adolescents with IBD varies globally, with many regions lacking standardized protocols and facing challenges such as insufficient training, poor communication between pediatric and adult clinics, and lack of resources. Studies consistently highlight the benefits of structured transition programs, including improved disease outcomes, better medication adherence, and reduced hospitalizations, while emphasizing the need for tailored approaches based on local resources and cultural contexts. International guidelines and enhanced education for both patients and professionals are crucial to optimize care during this critical period.
Future directions
Future directions for the transition process of pediatric patients with IBD should focus on several key areas.
Firstly, there is a need for standardized, evidence-based transition protocols that can be adapted to various healthcare settings and cultural contexts. These protocols should incorporate regular assessment of patient readiness, gradual transfer of responsibility, and establishing transition success criteria based on both patient and healthcare provider perspectives.
Secondly, the development of digital health tools and mobile applications could enhance patient education, self-management skills, and communication between patients and healthcare providers during the transition period.
Thirdly, research should explore the long-term outcomes of structured transition programs, including their impact on disease management, quality of life, and healthcare utilization in adulthood.
Additionally, there is a need for more studies on the cost-effectiveness of transition programs to support their implementation across healthcare systems.
Finally, future efforts should focus on training healthcare professionals in transition care and fostering collaboration between pediatric and adult gastroenterology teams to ensure seamless care continuity for young adults with IBD.
Methodological considerations and research gaps
While the available literature provides compelling evidence supporting structured transition programs for pediatric IBD patients, there are notable limitations in the current body of research. Many studies included in this review rely on retrospective observational data, which is inherently prone to selection bias and lacks the rigor of randomized controlled trials. Additionally, significant heterogeneity exists in study designs, outcome measures, and follow-up durations, making direct comparisons challenging.
A key limitation is the reliance on self-reported patient adherence and disease control metrics, which may not always accurately reflect real-world outcomes. Moreover, while some studies assess the impact of structured transitions on relapse rates and hospitalizations, few provide long-term data on quality of life, mental health, and social integration. Future research should aim to address these gaps through prospective, multicenter studies with standardized outcome measures, ensuring a more comprehensive understanding of transition efficacy.
Controversies in the literature on transitional care
Despite the growing consensus on the benefits of structured transition programs, several areas of controversy remain in the literature. One major debate concerns the optimal timing of transition. While some guidelines advocate for transition between 16 and 18 years of age, recent studies suggest that a more individualized approach considering disease activity, patient maturity, and healthcare system constraints may be more beneficial. There is no universally accepted age threshold, and different cultural and healthcare settings further complicate this issue.
Another area of contention is the role of digital health tools in transition care. While some studies highlight the benefits of telemedicine and mobile applications in improving patient self-management and adherence, others argue that digital tools may not be universally accessible or effective for all patients, particularly those from lower socio-economic backgrounds.
Lastly, the extent of pediatric and adult provider involvement in transition remains a point of discussion. Some models advocate for a prolonged, joint-care phase between pediatric and adult gastroenterologists, while others favor a more direct transfer approach. The absence of a global consensus on best practices underscores the need for further research to refine transition models based on patient-centered outcomes.
Conclusions
Managing pediatric IBD presents unique challenges, including growth stunting, delayed sexual maturation, and psychological issues, necessitating tailored treatments and a multidisciplinary healthcare team. Most healthcare facilities treating IBD patients lack formal transition protocols, negatively impacting healthcare. A transition plan must be explicit, personalized, and clearly communicated to each patient. Effective transition processes can improve medication adherence, appointment attendance, disease-specific knowledge, and self-management skills, potentially reducing emergency room visits, hospitalization rates, and the need for intensified treatments. Given the critical nature of transitioning from pediatric to adult care in chronic condition management, all institutions treating pediatric IBD should implement a well-defined, comprehensive transition protocol, adapted for the specific needs of different populations.
