85 - Patient and Family Experience with Transitional Care in a Population of Children with Medical Complexity
Sunday, April 30, 2023
3:30 PM – 6:00 PM ET
Poster Number: 85 Publication Number: 85.305
Bethany D. Corbin, Medical College of Wisconsin, Milwaukee, WI, United States; Jessica L. Schnell, Medical College of Wisconsin, Milwaukee, WI, United States; Megan B. Teed, Medical College of Wisconsin, Milwaukee, WI, United States; Lauren Younker, Children's Hospital of Wisconsin, Greendale, WI, United States; Molly Paul, Children's Hospital of Wisconsin, Greendale, WI, United States
Pediatric Hospital Medicine Fellow, Internal Medicine-Pediatrics Medical College of Wisconsin Milwaukee, Wisconsin, United States
Background: With the growing population of children with medical complexity (CMC) reaching adulthood, there is an urgent need for institutions to have proper resources and processes in place to help these patients transfer to adult providers. Each institution has its own unique barriers and patient factors to identify and address prior to creating a standardized process for transitional care. Objective: The aim of this project was to understand the patient/family transition experience at Medical College of Wisconsin-Children's Wisconsin (MCW-CW), with an overarching aim to identify barriers to address prior to the creation of a successful transition process for CMC. Design/Methods: For this single institution qualitative study, we recruited CMC and their families to participate in a 10-question semi-structured interview about their experience transitioning from pediatric to adult care. Eligible participants had (A) transitioned within the last 5 years and (B) been in the Complex Care Program at MCW-CW. Interviews were recorded via Zoom, transcribed, and coded by 5 independent coders using the Delphi Method. Codes were discussed to reach consensus ( >80% consensus). Codes were then used to develop themes related to the patient/family’s transition experience. We present data from the first 3 interview questions: (1) How old was your son/daughter when they transitioned? Do you think this was the right age, and why? (2) When did you start planning for transition? At what age do you think discussions and planning for transition should start, and why? And (3) How did you choose where to transition your care to? Results: Ten participants completed interviews. Age at transition ranged from 18-24 years. Analysis identified 7 main themes related to patient/family experience during the transition period: (1) Gradual, (2) Health Status, (3) Emotional State, (4) Provider Knowledge Base, (5) Models of Care, (6) Preparedness, and (7) External Barriers (see Table 1 for operational definitions). Representative quotes from each theme are included in Table 2.
Conclusion(s): The patient and family experience during this period of healthcare for CMC should be a key driver in developing institutional transitional care processes, and should frame the resources and protocols needed to ensure a smooth and safe transition period. This study provides important insight into what CMC and families value most during this period of their care. Future work will include administering pediatric and adult provider surveys with the ultimate goal of improving transitional care processes for CMC.
