Pediatric patients with IBD are expected to gradually assume responsibility for their care as they move towards adulthood. Disease self management and effective communication with their health care team are essential abilities that must be learned and practiced. This is a process that should begin at diagnosis through adult care transition. Children, adolescents and parents need to be encouraged and supported as responsibilities for care management are transferred to the child. Tracking the success of the learning objectives and the evolving transition process can be challenging.Methods:
Key skills and knowledge needed for successful, independent IBD management were identified. A checklist was developed with expected age of mastery based on stages of development. Each item was tracked by recording when information was given, when teach back by child/adolescent demonstrated understanding and when it was mastered. Because many patients are seen for a long period in the pediatric IBD practice, regular review of mastered skills was also tracked. The checklist is initiated at the IBD team pre-visit planning meeting and is reviewed by the nurse prior to clinic visits. Families are shown the list during initial IBD teaching to set expectations. Some clinic visits will include formal teaching and others will reinforce skill acquisition to continue forward progress. To build confidence in their abilities, children are given the opportunity to practice communication skills with the health care team without parent's presence during part of the clinic visit. Barriers such as language, education, developmental delay and finances can be recognized and adjustments made.Results:
A comprehensive age appropriate education packet was developed and integrated into the medical record. (See form) We are currently using these tools during clinic visits. Data is being collected to assess outcomes.Conclusions:
The IBD team needs a structured approach to organize education and track patient mastery of the tools to enable independent management. Self care takes time and practice. This progression requires consistent reinforcement and encouragement. A child will likely encounter many different staff over the course of their pediatric care. This tool provides continuity in the IBD education and expectations and a means of assessing progress towards self care This is best done in age appropriate stages with consistent reinforcement enabling the patient, family and health care team to feel confident that independence has been achieved.