1. A Specialist’s Story: My Path to a Mature Quality Improvement Program Ana Cairns D.O. F.A.C.P. Associate Professor of Pediatrics, MMC Cystic Fibrosis Center Director

3. How did QI come to the CF Community? CF Foundation Registry Northern N. England Consortium 1996  Seeking to improve CF care in N. New England  Puzzled by variation in care and outcomes at different centers  Un-blinding the data allow us to learn from each other

5. The Opportunity Statement  2002: “We believe that the life expectancy of CF patients can be extended through the consistent implementation of existing evidence- based clinical care.” CF Foundation  2003: Learning and Leadership Collaborative  QI training across 120 CF centers

8. Reactions to outcome data  The data are wrong  The data are right, but it’s not a problem  The data are right, it is a problem, but it’s not my problem. I accept the burden of improvement

9. Institute of Medicine recommendations for the redesign of health care “The health care system should make information available to patients and their families that allows them to make informed decisions…..this should include information describing the system’s performance on safety, evidence-based practice and patient satisfaction…”

10. QI and the CF Community 2006: transparency of CF Registry at www.cff.org CF Foundation’s Vision:  exemplary care at all CF centers  Ultimate goal: prolonging median survival in CF patients by 10 years

11. Involving families in improving care: CF Patient Advisory Council: Goals:  making care truly responsive to the needs and goals of families  to strive to improve the care delivered at CF centers  outcomes cannot improve without the input and participation of families 2006: MMC CF Patient Advisory Council formed

14. Team work Essential part of CF model Adult and pediatric multidisciplinary Team: MD, RN, RT, LSW, PT, Pharm D, MA, CNP, RD Effective and frequent meetings to evaluate QI projects are essential “Buy in” and ownership by the whole team is important

15. Picking your QI project Start simple-success is rewarding Pick projects with clear outcomes and goals that can be measured effectively Complex QI may take time to see change, be patient!

16. Charting Charting your process and displaying results critical to success Several methods:  Fishbone diagrams: explore and display sources of opinion about variation  Flow charts, Value stream mapping: pictorial representation of steps in a given process  Run charts: to display data over time-posted in clinic to monitor progress

17. Influences on Nutritional Success Psychosocial Family involvement Education S.E.S. Employment Transportation Healthcare System Motivation CF Center Education Allocation of funds and resources Administration Teamwork Awareness Funding Insurance Pharmacy assistance programs Alternative funding Vocational training Family finances Communication CF Centers Patient LLC II Administration UAB/CHS CF Team Patient’s family Patient Illness/Comorbidity Appropriate enzyme use Depression Malabsorption Steroids CFRD Lung Disease Pain Liver disease Denial Education Motivation Substance Abuse Eating habits Knowledge Behavior Depression

18. LPN/RN rooms pt VS, meds, allergies (Electronic data retrieval) Fellow CF RN Spiro RDMSWAttending MD Plan discussed and developed among team members Fill out Test reqWrite scriptsTeachingRadiology Plan conveyed to family Schedule next apptArrange tests Patient leaves Tests Laboratory/Radiology Pre-clinic meeting Patient arrives PMO registration Office registration Port-CF Adult CF clinic flow chart

19. Value Stream Mapping Chart Review Categorization of patients and port CF print outs CF Care Conference Nurses inform registration of orders Registration/Up date patient information Lab x-ray -Family responsible for bringing film to clinic Triage,Ht. Wt. VS Waiting room Clinic room Patient in clinic room/Sputum obtained Interview/history Plan made and discussed with patient and family Follow up plan and appointment Documentation PFT’s UA Growth percentiles completed by nurse or MD Walk through comments – 1. Too much waste in employee work habits (I,e, laughter and discussions in clinic area) 2. Duplication of medication history 3. No one asked about smoke exposure 4. More in depth information about family changes

20. Run charts

21. Benchmarking: best practice sites Looking at processes within a practice for minor improvements that effect change Pairing groups by discipline to identify ideas -have MAs talk to MAs, RN to RN Bringing home themes and attributes of other practices to share Share QI methods and “steal shamelessly”

22. Improving the CF inpatient hospitalization Goal: develop an CF inpatient nurse collaborative to improve CF inpatient care and the hospital experience for families Methods:  Patient surveys target key areas of education  Patient satisfaction surveys done over 12 months  All day CF Skills Fair for staff  Schedule boards in rooms

26. Examples: CF Culture Based Scheduling Goal: Separating patients based on respiratory culture to limit possibility of cross infection in clinic Categorized into four groups: - Green – Pa negative MRSA negative - Blue – Pa growth - Yellow – MRSA - Red – B. cepacia

27. Newly acquired CF pathogens

29. Pulmonary QI Goal: diagnose and treat more pulmonary exacerbations to increase our median Fev 1 over time Plan:  phone triage sheet for nurses  exacerbation assessment sheet for providers with “pulmonary exacerbation score”  RT added to clinic

30. Antibiotic use for pulmonary exacerbations

31. Median FEV 1 %

33. Improving Nutrition Better nutrition improves pulmonary outcomes and lengthens life expectancy Goal: improve the age specific median BMI % towards 55% Plan: more intensive interventions of patients with BMI<40% including: Monthly contact GI consultation-supplemental feeding More appetite stimulant use Better evaluation of glucose intolerance Short term goals with a reward system

34. Q1: Jan-Mar Q2: Jan-Jun Q3: Jan-Sep Q4: Jan-Dec Median BMI Percentile Quarter Median BMI Percentile 2008-2009

35. Sustaining a QI process The project leader needs to continually reassess process and outcome The team needs to stay focused and feel excited about the goals Run charts in clinic show progress and provide encouragement Reward your team and your patients when you achieve your goals!

36. Median Predicted Survival Age 1994-2006 25 30 35 40 '94'95'96'97'98'99 '00 '01'02 '03 '04'05'06 Year Median Survival Age (years) Predicted survival improves from 28.6 years to 36.9 years First CFF Center reports reveal variability CFF QI Grant program CFF National Quality Initiative Predicted survival improves from 27.7 years to 28.6 years 714 Lives

37. Summary Providing exemplary CF care can prolong median survival Making data transparent identifies best practice, provides incentive to improve Benchmarking best practicing sites is effective Incorporate families into quality improvement Share effective systems of QI

38. Our CF Team