The transition to independent living can be difficult for any young person, but when that critical life event is combined with the challenges of independently managing a disease like cystic fibrosis (CF), the experience can be overwhelming and result in catastrophic health consequences. Advances in treatment meant that CF patients were living longer and virtually all needed to transfer to an adult clinic by early adulthood. However, there was no standardized way to transfer the knowledge and skills necessary for a young person to take ownership and accountability for their own care when they reached this key milestone.
The CF R.I.S.E Program was developed in partnership with 18 multidisciplinary providers and parents with the goal of transferring critical knowledge and skills to young people with CF throughout adolescence and young adulthood. Dozens of age-appropriate, digital (and print) assessments were developed for patients as young as 10 to bring structure and measurement to the transition process in the care team setting. A clinician dashboard allows care teams to monitor their progress over time, and gauge their patients’ level of knowledge and skills relative to their peers around the country. Since its national launch, CF R.I.S.E. has become the de facto standard approach to managing transition to adult care.
With about 2/3 of all accredited CF care teams in the nation using CF R.I.S.E. today, the program has truly broken through. 91% of care programs surveyed indicated they would be using it a year from now and it was the subject of four quality improvement (QI) poster initiatives at the 2017 North American Cystic Fibrosis Conference (NACFC).
CF RISE: IMPLEMENTING A CLINIC-BASED TRANSITION PROGRAM
Baker A, et. al, CF RISE: Implementing a Clinic-Based Transition Program, Pediatric Allergy, Immunology, and Pulmonology, 12/2015.
QI Poster 1:
EXPANDING OUR TRANSITION PROCESS
Julie Merz, LMSW; Catherine Enochs, BSN, RN, AE-C; Samya Nasr, MD Michigan Medicine, Division of Pediatric Pulmonology, Ann Arbor, MI
QI Poster 2:
IDENTIFYING KNOWLEDGE GAPS THAT MAY HINDER TRANSITIONS: THE CF R.I.S.E. TRANSITION PROGRAM KNOWLEDGE ASSESSMENT MODULES
Riekert K, Bryson E. Capece C, Marikovics S, Nasr S, Nelson K, Sawicki G, Parker W
QI Poster 3:
ONE TEAM’S APPROACH TO PREPARING PATIENTS FOR THE FUTURE USING CF R.I.S.E.
Kecia Nelson MSW LCSW, Hannah Holzum RD LD, Natalie Harris BHS RRT, Connie Fenton RN BSN, Haley Hill RN BSN, Kristen Medley RN BSN, James Acton, MD
QI Poster 4:
QUALITY IMPROVEMENT IN TRANSITION: THE EFFECT OF A TRANSITION COORDINATOR
Susana Fajardo MPH, Jennifer L. Goralski MD, Lynne McGibbon MSW, LCSW, Courtney Busby RD, LDN, Elisabeth Dellon MPH, MD, Sheree Berckmans RN, Jennifer H. Leandro RN, BSW, Martha Taylor RN, BSN, Mike Rock, Amy Sangvai MSW, LCSW, Jennifer Dane BA, RTT, Jennifer Pagel MSW, LCSW, Marianne Buchannan MSW, Jaimee Watts, RN, Mary Beth Prieur PhD, Anna H. Hung PhD, Brooke Jones LCSW, Margaret Leigh MD