University of Missouri Team: Jim Acton, MD Julie Mullen (CF Parent) Connie Fenton, RN Kecia Nelson, MSW, LCSW Natalie Harris, BHS, RRT Harjyot Sohal, MD Hannah Holzum, RD, LD Danielle Staudenmyer, RD, LD David Isaacs (CF Patient) Grace Sullivan (CF Parent) Erin Jackson, Adm. Asst. Bob Zanni, MD (Coach)

5Ps Summary PURPOSE PATIENTS PROCESS Process PATTERNS PROFESSIONALS To be the best at preparing patients and families for and ushering them through a positive and seamless transition and transfer of their care from the Pediatric CF program into the Adult CF program at the University of Missouri. PATIENTS Process PROCESS PATTERNS PROFESSIONALS Peds and Adult core CF teams Administrative assistants Others Inpatient support teams Outpatient support teams Consulting services Reacted to pts approaching or passing 21 yo or other events/complications Highly variable and inconsistent Not organized or planned Little if any coordination between peds and adult teams Little if any organization to teaching and preparation before transition No feedback from patients and families

Creation and Use of an Obeya Room

Theme of transition/transfer (and additional improvement themes) We will create a transition process in which care will be seamless, comprehensive, standardized, and individualized; patients will be informed, activated, and engaged; healthcare teams will be prepared and proactive; patients, families, and care teams will be highly satisfied; and our center’s outcomes will be among the best reported anywhere. Clinic Efficiency We will improve the efficiency and effectiveness of CF clinic appointments to achieve shorter time in clinic for patients and families, optimize “facetime” and minimize “downtime” during appointments, optimize clinic efficiency for healthcare providers, and maximize satisfaction in the clinic process for patients, families, and healthcare providers. Mental Health Screening

Change ideas and PDSA cycles with measures Transition Patient satisfaction surveys Clinical summary form Pre-transition clinic combined team meeting Introduction “bundle” – letter, Adult team info packet, map, tour Combined transition clinic CF Rise assessment schedule (responsibility, knowledge) Clinic Efficiency Patient itinerary for clinic visits Clinic roadmap Clinic time study

SDSA and Playbooks Guidelines for standard periodic CF Rise assessment of knowledge and skills – both before and after transition Guidelines for standard education and coaching based on needs assessment Transition tracker spreadsheet CF Rise tracker spreadsheet

Dashboard to track measures over time

Examples and benefits of Effective Communication Regularly scheduled team improvement meetings – both separate and combined Scheduled quarterly combined team meetings to coordinate transition of patients Increased use of meeting skills and tools – conversational skills, agendas, minutes, roles Access to shared documents and calendar Use of patient itinerary and roadmap in clinics Structure for communicating before and during clinic More effective – fewer missed care opportunities More efficient – better use of time for everyone

Still some areas of concern, opportunities for improvement Relational Coordination Survey impact on daily delivery of CF care services and improvement of processes Baseline results showed us we had many areas of weakness = opportunities for improvement Attention to communication was embedded in many of our change concepts (eg, use of communication skills, development of communication tools, consistent meetings) Follow-up results show improvement in most areas, some very significant (eg w/ clinic staff and supervisors) Still some areas of concern, opportunities for improvement

Patient/family engagement in improvement Two parents and an adult patient/student Appreciated the effort everyone makes to give the best care possible Recognized the value in the team’s dynamics – unique strengths, respect for different opinions and perspectives Improved their trust and working relationship w/ care team Appreciate that their opinions are valued Feel much more involved in their child’s care moving forward Patients and families offer: Enthusiasm, commitment, engagement, motivation Unique experience and insight - the only “inside view” Diverse skills and interests Learnings Having a “team” of parents and patients can help with challenges of other commitments and conflicts Genuine transparency leads to trust and collaboration

General lessons learned A standardized, step-wise program to acquire CF knowledge and skills → pts/families are better prepared and have better experience Pts/families offer unique insight and energy to QI and we need to better facilitate their involvement Technology can help bridge gaps when teams are geographically separated, but intermittently meeting in person is critical Improving efficiency is important not only to decrease wasted time and resources but also to free up time for ongoing improvement efforts Effective communication can have a significant impact on how a team performs and the results they get, so we must pay close attention and practice good communication skills and strategies

Improvement plan for April through October Transition Ensure the process changes are solidly embedded in our practice Follow the transition process and assessment into the adult clinic Monitor and refine our process and outcome measures Identify focus and submit poster for NACFC Clinic efficiency Analyze preliminary time study data Identify next change concepts, measures, and PDSA cycles to improve clinic process Mental health screening Map process and analyze needs