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Background: Children’s Mercy-Kansas City (CMKC) is an independent children’s hospital in Kansas City, MO. Its CF Care Center (CFCC) provides care for 250 patients. The University of Kansas Medical Center (KUMC) is an academic medical center in Kansas City, KS. Its CFCC includes adult/pediatric programs (230/50 patients). Interactions between CMKC and KUMC were minimal prior to 2013. CMKC provided care through adulthood despite CF Foundation mandates requiring transition of patients aged 18-21 years. Transition only occurred per patient request. Methods: The CMKC CFCC underwent restructuring and staff expansion in 2013-2014. KUMC underwent staff expansion in 2012, adding a nurse, respiratory therapist (RT), social worker (SWO, and dietitian. These changes fostered improved communications and provided a foundation for developing a more robust transition program (TP). Elements of the TP included SW to SW driven initiation of quarterly meetings (none occurred prior to 2013), chaperoned tours of KUMC ambulatory and inpatient care areas, creation of a “Welcome Packet” by KUMC, and expanded inclusion of KUMC at the CMKC CF Family Education Day. In 2013, KUMC staff were invited to participate in breakout sessions and Q&A sessions with parents to help address concerns related to the RP and care at KUMC. KUMC also created co-clinic coordinator positions in 2013 with the SW and RT. This streamlined the TP by assigning education to the SW and logistics (medical records and scheduling to the RT. The KUMC and CMKC teams worked together to create a TP Worksheet and Checklist to endure that needed records were available. KUMC also developed a peer-to-peer program from transitioning and pre-transition patients to connect with adults already receiving care at KUMC. Results: The number of patients transitioned each year varied. The largest number of patients transitioned in a given year followed changed discussed above. The age range at transition narrowed between 2010 and 2016, with all patients transitioning by age 21 in 2015. Mean age at transition decreased. Conclusions: The unique situation at CMKC and KUMC resulted in impediments to a functional TP. Barriers included payer issues related to MO and KS Medicaid, a culture of “patient-driven” transition and insufficient staffing at both institutions. Reorganization of the CMKC CFCC and improved staffing at both institutions led to an improved TP, with transition of all adult patients from CMKC to adult CF programs. Communication and sustaining a “Culture of transition” are key elements in the development of a successful TP.




Presented at the North American Cystic Fibrosis Conference; November 2-4, 2017; Indianapolis, IN.

Implementation of a Multi-Institution, Multistate Cystic Fibrosis Transition Program

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