Objective: To provide practical clinical advice for gastroenterologists involved in the transfer of care of patients with pediatric onset inflammatory bowel disease from pediatric to adult care based on the best available literature and clinical tools.
Patient Population: Adolescents and Young Adults with IBD (AYAs)
Highlight Box
- A structured transition process is associated with better outcomes
- A prospective clinical trial evaluating the role of a transition program involving clinical resources such as a transition navigator and a comprehensive educational program is underway. This CCP will be updated based on the results obtained.
- This CCP is created based on currently available evidence and clinical tools
Introduction
Pediatric to adult transition of care is the process of migrating a patient with chronic disease from pediatric to adult care. It requires continuous, coordinated, and comprehensive care while paying attention to the clinical, psychosocial, and educational/vocational needs of adolescent and young adult (AYA) patients. If the transition and transfer process fail, it can lead to an increase in emergency department visits, hospitalizations, medication adjustments, surgeries, adherence and negatively impact quality of life.
Due to the growing number of cases of inflammatory bowel disease (IBD) in children, it has become increasingly necessary to establish a structured transition plan for AYAs. To achieve this goal, the Canadian IBD Transition Network and Crohn’s and Colitis Canada joined forces to develop a set of care consensus statements to provide a framework for transitioning AYA from pediatric to adult care. Since then, the Canadian IBD Nurses (CANIBD) have developed an online clinical tool for transition of care with practical tools.
This CCP is primarily based on the March 2022 published Canadian Consensus statements on Transition of AYAs with IBD and also incorporates the results of an updated literature search conducted from June 2019 to July 2022.
Phase 1: Pediatric Phase
Clinical
- Identify the IBD transition patient:
- Age 12+
- Consider special needs (developmental, pregnancy, psychosocial)
- Discuss goals (treatment, transition, others) and expectations
- Review the transition/transfer timeline
- Review the assessment plan
- Clarify communication strategies
Operational
- Please refer to the TransitionIBD Flowsheet (CANIBD, 2024)
- Initiate the transfer summary
- Initiate a transfer checklist
Phase 2: Care Transfer
- Identify & initiate referral to adult gastroenterology
- Be aware of target recipient providers, associated wait times, geographic availability
- Discuss impending transfer with patient and their care partners. Consider discussion points listed in Table 1.
- Send transfer of care summary to the target adult gastroenterologist early (according to local wait times) and clearly indicate the priority of transfer and any time sensitive issues that need to be addressed early in adult care
- Adult providers should prioritize transfers of care within 6 months of referral receipt
- Be aware of age restrictions for local health facilities (ambulatory clinics, hospital admissions, endoscopic procedures, surgical procedures)
- Consider a more comprehensive handover plan for complex cases (for example multi-disciplinary case conferences)
- Ensure continuity of the larger health care team
- Primary care providers (especially for children leaving the care of pediatricians, be aware of local availability) should be aware of the transfer
- Health insurance (for medications, stoma devices etc.) should be up to date
- Additional sub-specialists and allied health providers should have a transfer of care plan if appropriate and should be included in correspondence
| By the pediatric healthcare team before the transfer |
| Differences in procedural sedation How to access pediatric medical records The role of the primary care provider in IBD care The intended receiving adult gastroenterology health care team and location |
| By the adult health care team at intake meetings |
| Expectations related to IBD-related care Collaborative realistic goal setting Roles of AYA in adult care Roles of parents/caregivers in adult care How, who and when to contact the adult healthcare team How to access adult medical records Differences in procedural sedation |
| AYA, adolescents and young adults; IBD, inflammatory bowel disease |
Phase 3: Adult Phase
- Transition skills assessment
- Consider using the Transition Readiness Assessment Questionnaire (TRAQ) (Rosen et al., 2016) and the TransitionIBD Flowsheet (CANIBD, 2024). Please refer to the Appendix for a comprehensive listing of available transition skills assessment tools.
- Engage healthcare partners in addressing the healthcare needs of the patient
- Be aware of local allied health resources (ex nursing support, dieticians, psychologists/psychiatrists, social workers etc.)
- Potential issues to address: Preventative health, contraception, mental health, monitoring related to advanced IBD therapies
- Be aware of local allied health resources (ex nursing support, dieticians, psychologists/psychiatrists, social workers etc.)
- Identify and address special populations
- Young adults who may live elsewhere for occupational or academic reasons
- Establish an emergency care plan
- Consider medication routes of administration that may be more convenient
- Discuss local resources such as student health services, local laboratories to assist with ongoing care
- Ensure a communication plan that accommodates distance (ex virtual care, secure patient messaging systems etc.)
- Special needs patients
- Pregnancy
- Young adults who may live elsewhere for occupational or academic reasons
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