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.

1. Leading Quality Improvements in
Pediatric Rheumatology Care
A Learning Network Approach

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. 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. 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. What will it take to get the right
care to the right child in the right
way at the right time,
every time?

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. Interactive, Engaged, Participatory Networks

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.  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. 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)
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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. 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. PR-COIN JIA Medication Choice Cards

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

15. 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

16. 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