ImproveCareNow Ibd


We're all in this together.

Sarah Myers is the Executive Improvement Director for ImproveCareNowA few months back I wrote about the importance of stories as we work together to improve care for  kids with Crohn’s disease and ulcerative colitis. And what a wonderful collection of stories we are building! But we also know that data and measurable outcomes (like % of kids in remission, and % of kids NOT taking steroids) are really important too. One of the most important tools ImproveCareNow (ICN) teams use is called 90-day goals.

 

90-day goals are meant to ground and shape teams’ quality improvement (QI) work. Teams use QI to see where the gaps are in the care they deliver to each patient, and all patients, they see with IBD, and figure out the best ways to close those gaps (or make real improvements in care and outcomes). These goals also provide a rallying point for team members, keeping them aligned, focused, and motivated. Done well, 90-day goals are incredibly motivating and help the team strive to achieve big things together, while also honing in on the individual (sometimes nebulous) ideas for improvement. In QI it is always important to refine your goal or aim into something specific, measurable, (hopefully) achievable, realistic, and time-bound (SMART).

 

I have been reflecting on the diverse goals that ICN teams set for the last quarter of 2014. I want to share some of my favorites - and give you a little snapshot of the work that is going on across the Network. Whether new to the Network or having years of experience with collaborative quality improvement, ICN centers are working to create systems that are sustainable and manageable, to better understand the needs of individual patients and groups of patients, and of course to get more patients into remission and keep them there.

 

A brand new center: “We will register 70 patients total (50% of our estimated eligible population).” This reflects an important focus on the basics—getting patients into the ICN registry so they can benefit from the tools available to learn from their data and make related improvements in care.

 

A team that is gaining momentum after about six months of participation in ImproveCareNow: “Each faculty will review a Pre-Visit Plan on at least 25% of their IBD patients.” This center has worked hard to get patients into the ImproveCareNow registry. They are now ready to focus becoming a proactive, prepared practice team—assessing the needs of patients prior to visits. They are starting small so that they can test different changes and learn as they go…before spreading to even more patients.

 

A “veteran” team aiming to make sure that patients transitioning to adult care are prepared for that major milestone:By December 31, 2014, we will achieve…20% increase in patients 16-18 years old with a transition plan.” This center knows that transition to adult care is so much more than just making a referral to an adult physician. They want to know that their patients have the knowledge, skills, and tools they need to navigate that journey.

 

And a team that has already achieved an impressive 80% remission rate, pushing to see how high they can go: “By December 31 2014, the remission rate will  consistently be 85% two of the three months of the quarter.” This center has built a reliable, proactive, and patient-centered system. They and others are setting a new bar for the outcomes that are possible when all members—patients, parents, clinicians, and improvers—work together!

 

It can be hard to explain what a complex system like ImproveCareNow is all about. There are a lot of moving parts! After all, we can all agree health care is very complex! As a leader in this network, I know we often talk about the big innovations, the patient stories, and the work we do to keep this community connected across the miles. But these individual goals give a real concrete look at part of the foundation of this network’s success. The day-to-day, on-the-ground work that goes on at 71 (and counting!) ICN care centers across the US and UK.

 

It’s important to point out that the goals of brand new teams, which focus on ensuring every patient with IBD is included in the ImproveCareNow registry and that data is 100% complete and accurate,  are no less important than the goals of more experienced teams. Once a solid foundation for improvement is laid, teams are able to focus on achieving even better outcomes (like higher remission rates). It is a continuum—a journey that all centers begin when they join ImproveCareNow. And as a Network that encourages “seamless sharing and shameless stealing,” none of the centers are working toward these goals alone. Experienced teams become mentors and coaches for newer teams even as they work toward their own goals.  And newer teams are able to go further, faster because we’re all in this together.

 

Thank you to the ImproveCareNow teams for another amazing set of goals. We can’t wait to see what you achieve together!

 

[Editor's note: Ask your care team about their ImproveCareNow goals next time you're in clinic.They'd be glad to share! Not sure if you're at an ICN center, find out here.]


The Story of Empowered by Kids

Justin Vandergrift is a co-founder of Empowered by KidsJustin Vandergrift believes when you’re meant to do something, doors will open. But you have to be there when the doorbell rings. You have to open that door. And Justin has opened a lot of doors in his life. He runs multiple companies, volunteers at Levine Children’s Hospital, and has made it his mission to deliver hope and inspiration, information and empowerment to families (just like his) living with a chronic illness – like Crohn’s disease, which his daughter Kathryn has

Crohn’s disease, along with ulcerative colitis, is also known as Inflammatory Bowel Disease or IBD.

I asked Justin to share the story of Empowered by Kids (EBK), the non-profit he co-founded with two other parents (Tania Moon and Julia Ament-Cox), to fast-track the delivery of hope, inspiration, information and empowerment where it’s needed most.

The story begins with an ImproveCareNow (ICN) Learning Session and a greeting card.

At his first Learning Session, Justin remembers Mary Jones from Texas Children’s sharing how she designed a card and filled it with greetings from patients and hand-delivered it to kids with IBD staying on the inpatient floor. It was a huge success.

Justin loved the idea, so he partnered with an aspiring artist and pediatric IBD patient back at Levine to design a card and then filled it with greetings from patients. He printed the cards and added them to the inpatient care kits the Levine support group put together. The response was amazing!



“I remember our Social Worker telling me the cards were the very best part of the care kits!”

 

Building on the success of the greeting cards, Justin and the ICN Parent Working Group hatched a plan for a “Book of Hope” - a collection of stories and greetings from parents and patients with IBD, designed to deliver hope well beyond the walls of a single hospital. Enthusiasm for the project was overwhelming! But it was not clear how to pay for it and what the legal implications might be. Sensing the door closing, Justin turned toward the next.

For his birthday, he wished for nothing more than the support of family and friends, and was overwhelmed by their generosity. Recognizing this as the opportunity to bring Book of Hope to life, he teamed up with Tania Moon and Julia Ament-Cox, whom he had been working closely with on the project, and EBK was born.

 

EBK logo

 

In six short weeks, the trio established EBK as a 501c3 non-profit, launched a website, laid out stories from 25 parents and patients with IBD in the first edition of the Book of Hope, and printed 10,000 copies.

They arrived at the Fall 2013 Learning Session with hope in hand, and blew everyone away as they unveiled the Book of Hope and invited ICN care centers to order as many copies as they needed (free of charge) to give to all patients and families with IBD across the network. Today, Justin estimates over 60% of ICN centers have the Book of Hope in stock. And it is always available for free download online here.

The Book of Hope, like everything EBK creates and shares, is designed for parents and patients, by parents and patients. Everyone at EBK has lived through chronic illness diagnosis, and is still on the journey. Their goal is to make it just a little bit easier for those that come after them by sharing tools and information that empower patients and parents to ask good questions and make good decisions; by providing hope and inspiration as a constant reminder that no one is in this alone; and by bringing together a community of people who will continue to support, inspire, educate and empower one another.

Ding Dong…Ding Dong…

Do you hear that? It’s a doorbell ringing. Go ahead open the door. Connect with EBK. They’ve been waiting for you! Here are a few ways to connect:

 

M Troy Tweet EBK

 

In case you’re wondering, Justin still listens for the doorbell. Here’s a sneak peek at some of the EBK doors that will be opening soon.

  • Hope on Demand, an iOS app delivering hope to your apple device
  • Hypoplastic Left Heart Syndrome Book of Hope - Winter 2014
  • EBK IBD Podcasts, combining ICN center highlights, opportunities and best practices

 


I wish I knew _______ about IBD.

Speak out. Tell ImproveCareNow what IBD questions need to be answered.


What do you wish you knew about Crohn's disease or ulcerative colitis? Do you have questions about diagnosis or treatment options? What about daily management of IBD? Maybe you've wondered if a certain drug or lifestyle change would help. These are important questions! The answers could have an incredible impact on your life, the life of your child, the lives of many patients living with IBD.

ImproveCareNow is ready to answer your important questions – but we need you to tell us what they are!


Patient Priorities IBD Learning Priorities ProjectTeens and young adults with IBD, and their parents and clinicians are invited to participate in the IBD Learning Priorities Project - a study being conducted in partnership with Patient Priorities. Participants will be asked to share questions and concerns about IBD, and it's treatment, management, etc. in a confidential survey. The results will be used to create a list of the top learning objectives for ImproveCareNow to focus on.

Speak out! Tell us what you need to know. Go to patientpriorities.com to complete your brief survey, now.


Brain Science, Stress and IBD

When I was diagnosed with moderate to severe Crohn’s disease 7 years ago, I wanted a simple and straightforward “cure all” treatment. To my dismay, I learned that relying on one silver bullet drug, would not suffice. Controlling this disease was like trying to tame a wild animal and would require balancing many factors. I became attuned to how psychological stress and poor diet negatively affected my symptoms. With a careful combination of transient targeted steroids, immunomodulatory drugs, vigorous exercise, and lifestyle changes, I regained my ability to thrive. I returned to my former state of athleticism, regularly tackling the intense and unforgiving northern California waves with my surfboard.Andrew and his surfboard getting ready to tackle the northern California waves

 

I soon entered the University of California, Santa Cruz’s neuroscience and psychology programs. While I was intensely focused on my academics and extracurriculars, the foundational nature of the human brain became seemingly more important. Comprised of approximately eighty billion neurons or brain cells, the vast intricacy of this three pound organ is extraordinary: The relationships or “connections” between these neurons –– called synapses –– outnumber the stars in our home galaxy. These small spaces are in actuality busy microcosms of information transfer between neurons. Minute chemical messengers called neurotransmitters serve as the communicational media. It is widely believed that the way in which brain cells are connected and their chemistry determines our psychological state.

 

An image of a neuron

 

I took note: under times of intense pressure or stress my physical symptoms manifested. Was this just a mere coincidence? Or was there really something going on? With a neuroscientific lens, I investigated.

 

I found that the connection between the brain and body and its interactions in disease are well-recognized by the scientific community.1 Modern day stress is seemingly connected to our most primal of reactions – activating a “fight or flight” response – that would be more useful to us in prehistoric times in our interactions with predation. A stress hormone called Cortisol serves to direct our body’s resources (in the form of glucose) away from non-vital functions like digestion and immune activity. For this reason, scientists believe that prolonged stress plays a pivotal part in a myriad of autoimmune conditions.

 

The extent to which psychological states influence the disease progression of IBD is still somewhat unclear. Numerous studies and review articles, however, suggest that these psychological states play a role in both direct disease progression and how patients deal and cope with their disease. 2, 3, 4, 5

 

Reducing stress is just one of many changes that help me live with Crohn’s Disease. Further, just as important is staying informed and imaginative. This blog and the entire ImproveCareNow community represent a beautiful medium for these concepts to flourish. Thank you for your part in this community.

 

References:




    1. Sternberg E, Gold P. The Mind-Body Interaction in Disease. Scientific American Special Edition. 2002:82-9.




    1. Mawdsley JE, Rampton DS. Psychological stress in IBD: new insights into pathogenic and therapeutic implications. Gut. 2005;54(10):1481-91.




    1. Mikocka-Walus AA, Gordon AL, Stewart BJ, Andrews JM. A magic pill? A qualitative analysis of patients' views on the role of antidepressant therapy in inflammatory bowel disease (IBD). BMC Gastroenterol. 2012;12:93.




    1. Peters S, Grunwald N, Remmele P, et al. Chronic psychosocial stress increases the risk for inflammation-related colon carcinogenesis in male mice. Stress. 2012;15(4):403-15.




    1. Sajadinejad MS, Asgari K, Molavi H, et al. Psychological issues in inflammatory bowel disease: an overview. Gastroenterol Res Pract. 2012;2012:106502.

 


Hi, I’m Steve and I am a Hoosier.

Steve Steiner is a pediatric gastroenterologist, hoosier and cochair of the ICN Research Committee

For those of you unfamiliar with the term 'Hoosier', it is used to describe a native of Indiana. No one really knows who came up with it, but I do share the distinction with John Dillinger, James Dean, John Mellencamp, Michael Jackson, and David Letterman. My mother is a nurse, but there was never a doctor in our family until I graduated from med school.


Introducing Jessi! Read her story.

In 1999, at my 2-month check-up my family learned I have Turner Syndrome. Before my 6th birthday I had ear tubes put in; tonsils and adenoids taken out; a tethered spinal cord released; my bladder and kidney tubes reconstructed, and was on daily growth hormone injections. I was regularly followed by an Endocrinologist, Urologist, Nephrologist, Allergist, Cardiologist, and the “team captain” my Pediatrician. Despite all of this, I didn’t look sick. People thought I was vibrant, brilliant, and basically a healthy, cute little Muppet.

 

I am the middle of three girls. My older sister had a prenatal stroke, resulting in right hemiplegia and seizures. My baby sister spent the first month of her life in the NICU but is very healthy now. All that is really just to say that my family has spent a lot of time in hospital waiting rooms.

 

During my 6th grade year, I missed a lot of school with complaints of pain and fatigue.  A normal check-up for my asthma ended with a “by the way, I’ve had a lot of stomach pain and some diarrhea…” This prompted a second look at my weight chart, which showed a drastic loss of 21 lbs. in less than 2 months. Blood tests showed I was severely anemic and Vitamin D deficient. And so, we added Dr. Moyer, my GI from NWPGI, to my list of specialists. A colonoscopy was ordered, then we waited to find out if my official diagnosis would be Crohn’s or ulcerative colitis (UC).

 

My family and I believe that the fact that I was on long term antibiotics for both kidney and ear infections may have contributed to the triggering of my UC. It’s also possible that my frequent doses of steroids to treat my asthma masked, or put off my UC symptoms. By my 13th birthday, I had gone from 113 lbs. to 72 lbs.; from a girl’s size 16 down to an 8/10! Several bad flares led to ER visits, hospital stays, IV’s, several rounds of steroids, and recommendations for Remicade.  For me, with compromised kidneys, and a bicuspid heart valve, (my only real health threats from Turner’s) biologic drugs like Remicade are quite scary and will only be a last resort.

 

Because of my health, my family and I decided on home schooling for 7th grade. My mom and I decided to try the Specific Carbohydrate Diet (SCD) in hopes of staying away from Remicade or other heavy drugs. I thrived doing online school, eating a SCD diet, and we began doing individual food challenge tests to identify foods I really have to avoid. We were able to slowly add back some ground corn, like gluten free corn chips, rice occasionally, and sweet potatoes (my favorite!) into my diet. My health leveled out with these adaptations and we believe the carbs helped metabolize my meds and make them work better. I feel so much better on a gluten and dairy free diet, and feel bad very quickly if I eat “wrong”. Even Portland’s famous Voodoo donuts are no longer tempting because I know what will happen if I eat one. I take my prescribed Azathioprine, Delsacol, and Allopurinol along with VSL-3 Probiotics, Iron, Vitamin D, Fish Oil, and Calcium, and have staved off the need for Remicade so far.

 

One year later, and I was back in full time public middle school. I was in my second play, walked a 5K, only missed 2 days of 8th grade due to UC, and graduated from middle school with the highest honors.

 

Jessi Erickson shares her story about living with Turner Syndrome and ulcerative colitisNow, I will be a sophomore in high school this fall. I pack my modified Paleo lunch to school every day and have a 504 medical plan that gives me clearance to leave class and access to the nearest restrooms whenever I need to go.

 

I am sensitive to stress, still on hormone therapy for Turner’s, and turn into a mean little hulk when weaning off of Prednisone. I have been able to avoid steroids for a long time now by carefully watching what I eat and not missing any meds.

 

In my spare time I write, read, sing, and practice archery, (Twitter, Tumbler, Pinterest, and Facebook too!) I want to be a writer and travel. My first stop will be Ireland! I have a big imagination, an even bigger heart (not in the enlarged, real medical sense) and am willing to help anyone I can, especially other kids who are dealing with IBD.  I want to help raise awareness that Turner’s girls have higher chances of having IBD. This is still news to many endocrinologists who diagnose Turner syndrome.


Hi, I'm Randa and this is my story.

Randa Samaha was diagnosed with ulcerative colitis at age 5I was diagnosed with ulcerative colitis (UC) at the age of 5. Or at least that’s when my doctors were finally able to figure out what had been going on for years. As a 5 year old I learned, in simple terms, that my body was “overreacting and attacking itself.”

 

 For the majority of my young life, I did not know what it was like to not be in pain. I lived with continuous pain and symptoms. I lived with urgencies and emergencies. I learned how to deal with accidents and embarrassments. I learned how to speak honestly and openly about my UC. And most importantly, I learned how to advocate for myself.

 

I believe living with UC has made me a stronger person, and for that, I am grateful. I am grateful for what it has taught me and for where it has taken me in life. Today, I am a nurse because I looked up to my health care team and I am a patient advocate because I want to empower others to recognize their strengths.

 

My wish is to help other children living with inflammatory bowel disease recognize how strong and unique they are. I wish to empower them with the tools they need to learn how to listen to their bodies and nurture their souls, allowing for healing to take place. I know from personal experience that even when everything seems chaotic and out of control, we as patients still have the power to make decisions and must resolve to hold our head high, remain positive, and live life to the fullest.


Hi, I'm Isabelle

When I was first diagnosed with Crohn’s at age 15, I had absolutely no idea what that meant. For the first three months after my diagnosis I thought the medicine I was taking would just make it go away. I can still remember the day I asked how much longer I would have to take the medicine. My doctor looked surprised and then told me most likely for the rest of my life. After that I still lived in ignorance, thinking that taking the medicine forever would keep me totally healthy. It took months of intense illness to rid me of that notion. That’s when I fell into a deep depression. Everything seemed out of control and scary, and all I knew was that the rest of my life was going to be filled with this pain.Isabelle Linguiti

 

Of course I was incredibly angry about having the disease, but what made me even angrier was that nobody ever explained to me how IBD is not curable but it can be manageable. Nobody ever told me that while I will have it for the rest of my life I wouldn’t necessarily be in this much pain or this debilitated for all of it. Nobody ever invited me to give input into my own care.

 

I am not someone who takes well to being left in the dark so I starting spending all of my time stuck in bed researching and learning everything there was to know about IBD and its treatments. I read every study I could find and started bringing my ideas to my doctors. It was so frustrating because at every turn it felt like we were in uncharted territory and they didn’t know what to do but they still weren’t turning to me for help figuring it out. My opinions about what course of treatment I should take continued to form and in time I became more assertive.

 

I pressed my doctors to allow me to get a g-tube placed, something they don’t generally use in Crohn’s patients. It was the right choice for me. Despite resistance or at least hesitance on the part of my doctors, it ended up preserving my health during many periods of acute illness. There are other examples but I just share the g-tube as an example of why the knowledge and feelings of a patient are so important to consider in the decision-making process. I knew what my body needed and I was right.

 

Obviously I’m not a doctor and I should not be unilaterally deciding on the care plan, but I know that if I had not been advocating for what I felt was right for me in my unique situation, I would not be anywhere near as healthy as I am now. Now I feel like I have a really great team-based approach with my doctors. I want everyone to have that and I don’t want anyone to have to fight as hard as I had to in order to make that happen. I don’t blame my doctors for their resistance. I think they’re great and I believe they really respect me but including a patient’s perspective in decision-making is simply not the way things are done - especially in pediatrics. In my opinion having informed patients and a collaborative relationship between patient and doctor is the best, and frankly the only road, to optimum health.


The Moment, Continued

I've spent two weeks now at Cincinnati Children's Hospital, partnering with ImproveCareNow colleagues here in developing opportunities for patient engagement. Yesterday, fellow PAC member Alex invited me to be present at an orientation for newly diagnosed IBD patients and their families. As I sat at the "staff" table, I was hit by a quiet wave of shock. It's been over six years since my diagnosis. Over six years.One moment, I looked at a girl of about fourteen in the audience and saw my younger self in her. At the same time, I know I've changed in meaningful and (then) unimaginable ways since my diagnosis.


Hello Andrew

Andrew Kornfeld surfing at ocean beach in San FranciscoIt was the spring of 2007, and I was finishing up my junior year of high school. It had been the hardest year of my life with classes becoming increasingly more difficult and a mysterious illness plaguing my body.  With daily diarrhea, debilitating stomach cramping, anemia, and other severe problems (which I will spare you from) it became clear that something was seriously wrong –– it was more than just the gluten sensitivity and irritable bowel syndrome I was previously diagnosed with.  My illness was at a tipping point and my quality of life had decreased dramatically.

 

I was finally given a colonoscopy and subsequently my mystery was solved: I had moderate to severe Crohn’s colitis.  While I remember feeling relieved to finally have a diagnosis, I was also extremely disappointed that it had taken nearly a year. How much needless suffering had I endured?  Soon after my diagnosis and one failed surgery later, I made the transition to the UCSF pediatric IBD clinic with Dr. Mel Heyman. This may have been the most important decision of my life. Dr. Heyman, along with Laura, the nurse practitioner and a team of other medical professionals, identified the right medications for me, referred me to an exemplary surgeon at UCSF and ordered additional tests. Over the following months, the substantial decrease in my symptoms was nothing short of miraculous. To me it felt like being released from a confining and painful space, into one that was warm and safe.

 

Over the years, I have felt truly empowered by the team at UCSF to take an active role in the treatment of my illness. Some of the modifications I’ve introduced into my care plan have involved: a gluten and dairy free diet, the intake of potent probiotics, and getting plenty of exercise. I am an avid surfer, and feel really energized by the rough waves at Ocean Beach here in San Francisco. I have also recently become interested in how psychological stress may negatively impact patients with IBD, and would like to investigate this further. I am grateful beyond words to have had Dr. Heyman as my pediatrician and to be currently volunteering my time as part of the UCSF IBD team.

 

Andrew Kornfeld Andrew graduated from the University of California, Santa Cruz with majors in Neuroscience and Psychology. He is currently volunteering with the UCSF IBD clinic, and plans to attend medical school starting in the fall of 2015.


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