In a networked world, value comes from who you’re connected to, how you’re connected, and the ability to learn and share.
— Peter Margolis, MD

Pilot Phase Updates - December 2017

Exploring Special Cause Variation in Pediatric Nutrition Ages 2-19 Years

The following chart demonstrates that there is a special cause variation signal in the measure of average BMI percentile for patients ages 2-19 years old within the CF Learning Network. With the tight control limits, the special cause signal was triggered as it moved above the upper control limit. Similarly, there is a special cause signal across all the Care Center Networks. The encounter based registry allows the analysts to see the data in much more detail. Seeing the aggregate data of all of the patients in the Learning Network. We are very excited to share this data that the average BMI percentile of our pediatric patients is steadily increasing over time! 


Patient & Family Experience of Care Survey


Twenty-four Learning Network programs are now collecting the Patient and Family Experience of Care (PFEC) survey. From these programs, there are 2,294 adults with CF and 2,593 children with CF. Since 2015 there have been 8,788 asks to complete a survey, as people are asked to complete a PFEC after a clinic visit at most twice a year. 1,302 of those surveys have been completed.

The LN timely care bundle score – a group of 5 PFEC questions – has improved during the summer of 2016 from 24% to 34%. Drilling down into these 5 questions, one question is mainly driving this improvement: “Were you brought to exam room as soon you arrived for your appointment?” This PFEC question is not only about timely care, but also about infection control and providing a safe place for care. The national dataset result is 52% of the respondents reported “Yes, definitely” brought to exam room with the top 10% of the CF programs reporting almost 4 out 5 respondents (78%) were brought to the exam room upon arrival. In 2015, the result was as low as 34% and is currently hovering around 62%.

We can learn from CF programs that have a great result – how do they get that great result? We also can learn from the CF programs that have improved their result – what did they change in their clinic that created the better result?

Below lists specific programs who are showing improvements. Other CF programs may be working on this aspect of care, but there was not enough data to determine improvement or more time is needed to identify shifts in the data.

Three programs - Boston Children’s Hospital, Children’s Hospital of Orange County, and Children’s Hospital of Los Angeles - have significantly better results than other programs, 95%, 89%, and 83% respectively.

Three programs also have better results than others and also have improved their result:

o  Cincinnati Children’s Hospital Medical Center from 73% to 94%

o  Helen DeVos Children’s Hospital from 62% to 100%

o  Keck Medicine of USC from 48% to 76%.

Morgan Stanley Children’s Hospital has a result similar to most other programs and has improved from 50% to 76%.

University of Alabama at Birmingham has improved from 21% to 42% and University of Virginia Health System result was below 10% and has improved to 38%.

Another highlight is that University of Alabama at Birmingham improved the timely care PFEC measure of response same day from 61% to 97%.

Thanks for improving timely care! Teams have also been improving other aspects of care such as asking about mental health, infection control practices, and communication. Stay tuned for results in those measures!