We present a synthesis of the discussions at UEGW 2024, addressing key barriers and opportunities in transitional care: late initiation of the process, gaps in care coordination, recognition of life stage impact, and the management of disease characteristics. We hope these insights may contribute to the development of inclusive, patient-centred transition programs. The transition of care from paediatric to adult services for patients with chronic digestive or liver diseases requires combined engagement from both healthcare professionals and patients. To foster this dialogue, United European Gastroenterology (UEG) established the Digestive Health Roundtable, a recurring meeting of its annual congress convening the UEG Public Affairs Group with the major European digestive health patient groups: Association of European Coeliac Societies (AOECS), Digestive Cancers Europe (DiCE), the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA), and the European Liver Patients' Association (ELPA). In 2024, UEG PAC launched the report "Enhancing Transitional Care in Digestive Health: Addressing Challenges and Implementing Strategies Across Europe" (https://ueg.eu/files/3541/c5f5c23be1b71adb51ea9dc8e9d444a8.pdf). Effective implementation remains challenging. Medical and non-medical aspects must be coordinated. Late initiation of the transitional care process can negatively impact patient outcomes and the overall quality of care. Communication between paediatric and adult healthcare providers often lacks structure, leading to fragmented information exchange and a discontinuity in care. Limited involvement of patients, caregivers, and patient advocacy organisations in the planning of transitional care compromises its effectiveness by failing to account for the perspectives and needs of those directly affected. It is essential to implement comprehensive protocols that incorporate key tools, such as a medical passport for documenting clinical history and a designated transition coordinator to guide the process. This requires early initiation of transition planning, enhanced interdisciplinary communication, and the active engagement of all stakeholders in developing a structured, patient-centred, and culturally adaptable model for effective care transitions. Ideally, the transition should begin during adolescence, with a gradual process that includes education on self-management, increasing independence in healthcare decisions, and preparing to manage health independently. Frequently, the transition from paediatric to adult care occurs without a formal handover process, resulting in adult healthcare providers receiving limited or incomplete information regarding the patient's medical history, prior treatments, and individual care needs. In paediatric settings, patients are often managed by multidisciplinary teams that offer coordinated, comprehensive care. However, such integrated structures are less commonly available in adult healthcare and tend to be more fragmented, hindering the continuity and quality of care. Many adult healthcare professionals lack specialised training to address the medical, developmental, and psychosocial needs of young adults with chronic or complex conditions. Certain clinical scenarios, frequently encountered in paediatric populations, are rarely seen in adult practice. The transition to adult care coincides with critical psychosocial and developmental milestones, including gaining independence, making career decisions, and managing mental health. Young adults with chronic conditions or disabilities may feel overwhelmed about managing their health autonomously in their studies or entering the workforce. Schools, universities, and employers all play a key role in supporting the independence and integration of young people with chronic diseases, and their involvement should be considered in the overall transition strategy. In many countries, young adults may lose access to family health insurance upon reaching a specific age threshold. Inadequate access to insurance coverage or unaffordable healthcare costs may result in interruptions in treatment, potentially leading to worse health outcomes. Misunderstandings persist regarding the distinction between transition and transfer in the context of healthcare. Broader implementation of dedicated transitional care clinics is needed, ideally supported by clinical facilitators and case managers to ensure clear and consistent communication between paediatric and adult healthcare professionals. Patient education is important: young people should be empowered with tailored information delivered through accessible formats such as written materials, videos, podcasts and group sessions. Consistent funding, policies and public awareness campaigns may help patients to engage activities and social interaction. A structured transitional care model should incorporate short-, medium-, and long-term strategies to facilitate a coordinated and patient-centred shift from paediatric to adult care. The initial phase of transition involves the development of a comprehensive, individualized transition plan, guided by a multidisciplinary team that typically includes paediatric and adult care providers, social workers, psychologists, patient advocates, and caregivers. Structured, pre-transition meetings are essential to align all stakeholders on the patient's medical history, therapeutic goals, psychosocial needs, and disease-specific management strategies, to formulate a personalized transition protocol that considers cultural background, national healthcare systems, and potential language barriers. Interpreters and culturally competent training may help to bridge these gaps. The next critical step involves equipping both patients and healthcare providers with the essential knowledge and skills. This enables patients and caregivers to manage the complexities of adult healthcare systems. A "patient passport" can ensure that new providers have immediate access to essential clinical information. Patients should also be informed about potential changes in treatment protocols, medication regimens, and expectations within adult care settings. Digital tools such as electronic health records and secure communication platforms, mobile health applications, telemedicine, and artificial intelligence tools can enhance symptom monitoring, medication adherence, and coordination by care teams. Educational materials, group workshops, and individual counselling sessions should be provided. Furthermore, adult healthcare professionals — who may lack familiarity with paediatric-onset chronic diseases — require targeted training to understand the specific needs of transitioning patients and to deliver appropriate care. Families, particularly parents, often require assistance in adjusting to the gradual transfer of medical responsibility to the young adult. Educational programs or peer-support groups for families—potentially in collaboration with patient advocacy organizations—can serve as a vital element of a comprehensive transitional care model. Development of structured programs, sustained advocacy efforts, digital platforms and the appointment of patient ambassadors promote awareness and drive change. Integrating transitional care into hospital systems, medical school curricula, and continuing medical education is essential to ensure competencies needed to manage transition effectively. Dedicated transition clinics ensure that patients receive specialized care tailored to their needs. Healthcare policies should mandate standardized transitional care programs within medical institutions to promote consistent best practices. Former paediatric patients may act as ambassadors offering additional benefits: mentoring younger patients, providing peer support, sharing lived experiences and advocating for policy changes that prioritize transition services. A successful transition process requires a patient-centred approach involving healthcare providers in both paediatric and adult settings, patients, and caregivers. Transition care coordinators play a critical role in guiding patients by facilitating communication, providing education, and ensuring access to appropriate resources. Provision of targeted training for all stakeholders, and promotion of sustainable policies in healthcare systems can support continuous effective disease management during transition. The transition process necessitates formal training for healthcare professionals, and appropriate allocation of human resources. These measures help patients progressively develop confidence and independence in managing their chronic condition, while also preserving the quality of life for themselves and their families. Chronic diseases vary in their management needs, requiring tailored approaches and disease-specific training. The development of clear roadmaps and concrete "calls to action" for institutions, healthcare professionals, and patient organizations is essential. UEG and Scientific societies have been developing global guidelines and training recommendations for healthcare professionals. The active involvement of patient associations is essential as it helps to identify unmet needs and guides the creation of shared frameworks and implementation toolkits that are adaptable across countries. The authors declare no conflicts of interest. Data sharing not applicable to this article as no datasets were generated or analysed during the current study.
Dias et al. (Wed,) studied this question.