Kicking Up Confidence

My lucky parents were blessed with a child who not only won the IBD lottery, but long before that diagnosis, had a severe reaction from eating a nut at age two. Growing up with a life-threatening nut allergy, I became accustomed to standing out from my friends long before my IBD diagnosis – but that is a story for another time. The point here is, I mastered the game of careful avoidance from a young age. Although I was not sensitive to the smell of nuts, I would take care not to even hang out in the same room as any. I was taught well that they were the enemy, and the farther away I stayed, the safer I felt.

So, you can imagine my surprise (read: horror) when, on my very first college campus tour, our guide announced that one of the distinguishing features of the campus was a large courtyard brimming with pecan shells. I stuck to the sidewalk when the group walked through the (admittedly beautiful) pit of possible death, trying hard not to let this unexpected development spoil a day that had been wonderful up until that moment.

I came home disappointed but determined. I returned for a second campus visit prepared. After two rounds of allergen testing (including literally walking into my allergist’s office with a bag of pecans and asking that we rub them all over my feet), we confirmed that although I had not outgrown my oral allergy to pecans, I did not have a skin allergy. So, one year later, I returned to that pecan court – and despite the March cold – donned flip flops and stomped all around that thing. My heart was racing, but I had to prove to myself that I could do it.

Pecan Court as described by Sami I was literally walking, kicking, and dancing through a Pit of Things that Could Kill Me.

But I did it. And nothing happened.

Three years later, I walk through that pecan court at least once a day. And sometimes, I feel a little surge of victory. I can do what I once thought I couldn’t do. Other times, though, I feel a pecan shell slip beneath the sole of my shoe and rub up against my foot – and despite the overwhelming evidence that I won’t react – I still look for a hive to pop up. I am safe – but I can never erase that twinge of fear and doubt.

IBD is similar in some ways.

I have been in remission for over two years. But in that moment I see a red-tinge on the toilet paper, my mind inevitably begins to race off in directions I know it shouldn’t go. I’ll think, ‘This is it. This is the first drop, and tomorrow there will be two drops, and then in a week there will be red all over the bowl, and then I will be on Prednisone, and I should go freak out now.’ I always manage to regain my common sense by the time I finally flush that terrible industrial grade skin-irritating toilet paper away, but the panic never fails to set in for just a moment there. Even now.

I know remission is not a cure, and thus I am always ready to lose it. When I feel an abdominal cramp come on, I know I should go straight to the conclusion that it’s just my menstrual cycle. That’s the most likely conclusion, and for three years, that has been what it always turns out to be – but my mind never goes there first, even now. Perhaps it’s a coping mechanism for when the day does come that I slip out of my remission – as if I think I’ll find comfort in saying, ‘Well, at least I knew this was coming.’

Living with a chronic illness, I am always walking through a pit of danger. Right now, I’m protected, my treatment is doing its job, but I know my armor is unlikely to last me forever. My 6mp probably won’t hold off my immune system until I’m old and gray, but in the absence of a cure, my disease isn’t going anywhere. Even my medications could hurt me one day.

But, just like with my nut allergy, there are things I can do to protect myself. I can take my meds on schedule. I can check in with my doctor every three months. I can be alert to my body and bowel movements so that I catch bumps in the road before they progress to flares. I can avoid behaviors and foods that might trigger problems, and do my best to keep my body healthy and rested.

It’s important to know what I can’t do, but it’s equally important to know what I can do. I can walk through that pecan court. And, with a touch of luck and a lot of cooperation as an engaged patient, I can be an IBDer who hangs on to that remission for what I hope will be a good long time. It’s important to know where I stand, but even more important to walk with confidence through wherever I am – whether it’s the sidewalk or a courtyard of pecans, remission or a flare.

IBD was certainly unexpected and (if I let myself become preoccupied with all the what-if’s of my disease) can be unnerving, but I am walking, kicking, and dancing through it.

ICN Remission Rates: A Real Improvement

Control chart showing ImproveCareNow Remission Rates as of December 2012 for centers with greater than 75% enrollment of eligible IBD patients

A control chart allows us to detect when there has been a significant change—a real improvement.

This graph shows that the remission rate has been increasing steadily since February 2012, and in August 2012 the remission rate crossed the dotted line (the upper control limit), indicating that a real improvement had occurred.  It also shows that the average remission rate has increased from 60% in 2007, to 71% in 2008, to 75% in 2010, and to 77% in 2012.  The ImproveCareNow Network will continue to apply the Model for Improvement and use QI tools to improve the remission rate to 80% or more.

Population Management Drives Improvement at University of Michigan

The ImproveCareNow Quality Improvement (QI) Team at the University of Michigan has been working very hard at improving their QI processes.  They now have had a long trend of improving remission rates from one population management report (PMR) to the next. But like any good researcher, they had to ask themselves: is this a real improvement in disease status for our patients, or an artifact of better data?

Physician Leader Dr. Jeremy Adler thought that major contributors to improved remission rates over the past year include: 1) improved processes with more complete data collection, 2) educating clinicians who misunderstood the methodology and consistently misclassified visits, and 3) new and improved PMR process, in that order.

Dr. Adler’s team began digging through their data, and leaned a few things.  In the interest of helping others in the ImproveCareNow Network – which is what collaborative medicine is all about -  the Michigan team shared what they learned from analyzing their data.

Here is what the Michigan Team learned – in Dr. Adler’s words:

University of Michigan QI Team Analysis of Remission Rates 1. We are still collecting data on paper forms (we just went live with EPIC).  We had a high rate of visits with missed data capture.  So many of the data points were old.  We made many attempts to improve return rates of data forms, which eventually improved our data collection rates.  We also have had several changes in our forms designed to help highlight questions that were frequently missed.

So I went through our pre-visit planning (PVP) forms to manually calculate remission rates from the column “PGA Remission Status” (# patients in remission / # total patients).  I then went through Excel to exclude the data points where the data were >200 days old.

On the enclosed graph, the red line represents the original remission rate from the PMR. The blue line represents remission rates with data >200 days old excluded.  I was surprised to see that there is very little difference.  I suspect that this means that when we miss data collection, we miss it for everyone, not just sick patients.

2. I then learned that a provider had a misunderstanding of the Physician Global Assessment (PGA), and was routinely classifying based on overall disease course, rather than disease activity at the time of the visit.  I then went into excel to exclude all the data from that provider (green line).  Again the remission rates did not change substantially.

3. This leads me to believe that our improvement in remission rates may be true improvements in disease status.  The improvement in remission rates starting in April-May coincides with when we began routinely having population management meetings, and routinely acting on our findings.

University of North Carolina at Chapel Hill QI Team Quote about Population Management

Aside

ImproveCareNow is an active, open learning health network that uses collaboration and data to drive improvements in health outcomes for kids with Crohn’s disease and ulcerative colitis. Since ImproveCareNow began, the percentage of kids with Crohn’s disease and ulcerative colitis who are in remission (feeling well, no symptoms, fully active) has increased from 50% to over 75% – all without new medicines.

Our remission rates are published monthly in our Patient and Family eNewsletter CIRCLE, and to our Facebook page and our websiteSign up to receive CIRCLE today.  The next issue is scheduled for publication on Tuesday, September 25th!