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Leading Quality Improvements in Pediatric Rheumatology Care - Dr. Esi Morgan

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This talk was given by Dr. Esi Morgan of Cincinnati Childrens Hospital to a group of patient families, at Systemic Juvenile Idiopathic Arthritis (or SJIA) Family Day on July 22nd, 2017.

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Leading Quality Improvements in Pediatric Rheumatology Care - Dr. Esi Morgan

  1. 1. Leading Quality Improvements in Pediatric Rheumatology Care A Learning Network Approach
  2. 2. Pediatric Rheumatology Care and Outcomes Improvement Network: PR-COIN  Launched in 2011  A sustainable collaborative of pediatric rheumatology centers using quality improvement initiatives to improve outcomes  18 centers and growing  Over 4800 unique patients and 28000 visits in shared registry International, quality improvement Learning Network working to improve care for children with Juvenile Idiopathic Arthritis
  3. 3. Why? Many “Leaks” from Research to Practice Aware Accept Target Doable Recall Agree Adhere Valid Research Even if 80% is achieved at each stage then Glasziou, Haynes, ACP Journal Club 2005 Slide courtesy of M. Kappelman 0.8 x 0.8 x 0.8 x 0.8 x 0.8 x 0.8 x 0.8 = 0.21
  4. 4. Shouldn’t outcomes be the same ….. wherever a child with JIA goes for care? Funnel Chart 33 point difference Percent of patients with clinical inactive disease
  5. 5. What will it take to get the right care to the right child in the right way at the right time, every time?
  6. 6. Learning Healthcare System  Patients and providers work together to choose care based on best evidence  Drive discovery as natural outgrowth of patient care  Ensure innovation, quality, safety and value  All in real-time
  7. 7. Interactive, Engaged, Participatory Networks
  8. 8. PR-COIN Approach and Achievements JIA: • Chronic childhood painful, inflammatory condition • Affects 1:1000 -1: 10,000 children • Can lead to long term disability, pain and reduced quality of life • Early diagnosis and proper treatment improves long term outcomes Challenge: • Variation exists in treatment patterns by providers, medical centers and geographic locations • Result: Patients are not reaching optimal outcomes (inactive disease, low pain score) PR-COIN • Network of experts • Engaged patient/parents • Tools and successful processes developed • Learning from data • Peers share best practices • Improve faster together than alone • Outcomes: • Reliable performance of standard care • Improved remission and disease activity
  9. 9.  PR-COIN follows Institute for Healthcare Improvement’s “Breakthrough Series” model and Wagner’s Chronic Care Model . - proven methods for improving outcomes  PR-COIN evaluates performance using published clinical outcome and clinical process measures to identify areas for improvement PR-COIN Learning Network Approach Percent of patients newly prescribed DMARDS who had medication counseling
  10. 10. R.Colletti 2009 12. Growth status is classified (100%, 90%, n=29) Number of patients enrolled in Clinipace (cumulative) 17. Appropriate doses of Sulfasalazine and/or Mesalamine (83%, 85%, n=6) 18. Started on a 6MP or azathioprine . . . pre-tested for TPMT level (100%, 90%, n=3) 11. Satisfactory growth status (99%, 88%, n=89) 3. Disease severity is documented (100%, 90%, n=29) 6. Nutritional status is classified (100%, 90%, n=29) 2. Disease phenotype and extent of disease are documented (100%, 90%, n=29) 4. Height, weight and BMI are plotted (96%, 90%, n=25) 5. Satisfactory nutritional status (97%, 89%, n=89) 1. Complete diagnostic and initial evaluation (100%, 90%, n=1) 0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100% 0 20 40 60 80 100 04/07 06/07 08/07 10/07 12/07 02/08 04/08 06/08 08/08 10/08 * 0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100% Plan DoStudy Act Patient visit Data-in-EHR or Medical Record Web based data entry or Electronic extraction Electronic transfer Data analysis Data reporting to sites QI analysis PR- COIN Research datasets Plan and carry out changes Clinical care
  11. 11. Parent Engagement Supports Improvement  Our Parent Working Group participates in network QI activities by co-producing materials and collaborating with local sites, sharing insight about patient and family needs  The PR-COIN Parent Working Group Facebook Group currently has 380+ family members and the Patient Group is growing
  12. 12. PR-COIN JIA Medication Choice Cards
  13. 13. Co-Produced Self-Management Guide 1. Introductions and Expectations 2. Basic Questions 3. Treatment 4. Focus on the Family 5. School Information 6. Financial Resources 7. Managing Your Arthritis At Home 8. Tools and Record Keeping 9. Website Resources 10. Appendix
  14. 14. ADHERENCEBARRIERS ADHERENCE SOLUTIONS Can’t afford the medicine I don’t need the medicine The medicine does not work Makes me worry about future side effects/consequences Side effects (e.g., nausea, stomachache) Forgetting to do the treatment Hard to swallow pills Refuse to take them I don’t want others to know I take medicine Difficult to follow instructions Impact on having children in the future Ran out of the medicine Gets in the way of other activities Hate the taste Inconvenient Treatments are painful Social Work Referral Primer followed by Behavioral Medicine Referral Injection Tool Educational materials about medications Discussion between health care provider and patient Makes child uncomfortable or upset Review Forgetting Tool Review Taste Tool Review Pill Swallowing Tool Review Side Effects Tool Review Embarrassment Tool
  15. 15. Contact PRCOIN Parent WG  If you would like to get in touch with the parent rep for your site or learn how you can help, please email prcoinparents@gmail.com  Join us on Facebook www.facebook.com/groups/365647753579799 Learn more about PR-COIN at  https://pr-coin.org

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