ImproveCareNow Ibd


A Letter to My Younger Self

Dear Younger Me,

I know you're scared and this past week in the hospital has not been all that great. All the tests and doctors are so new to you. The doctors said you have Crohn’s disease. It’s going to be okay, I promise.

I wish I could tell you these next few years will be easy, but they won't. You're going to go through some pretty tough stuff that many kids your age will have a hard time relating to. Most won't even understand it and that's okay.


PAC Welcomes Six New Members

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Let's give a warm welcome to - and get to know - six new members of the Patient Advisory Council (PAC). Grady, Nick, Natalie, Shawntel, Emily and Laci are ready to #imPACt the lives of kids with Crohn's disease and ulcerative colitis, by raising awareness about the realities of life with Inflammatory Bowel Disease (IBD) and building connections and tools to support each other and all young patients with IBD. They're also using their voices and experiences to actively represent over 27,400 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes as part of our Learning Health System. Let's meet them.


Implementing Transition & Transfer of Care Systems in Pediatric IBD

Studies of transition readiness in young adults with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) suggest that patients often lack disease-specific knowledge and are not confident in their ability to manage their disease. This can lead to worsening disease activity and increased healthcare utilization.

Preparing young patients with IBD to transition from pediatric to adult care, and actively transferring care to the adult care team, is crucial to ensuring the continued effective management of IBD. Within ImproveCareNow, the Transition Task Force is focusing on transition and transfer of care across the network.


What's the buzz on Buzzy?

Liz is a mom of three whose youngest son was diagnosed with ulcerative colitis (UC) at age five. To manage his UC he takes Humira injections, which are known to be painful. Liz remembers vividly how stressful and difficult it was to get past the pain and anxiety on injection day. The process of negotiating would take nearly an hour, and when the shot was finally given everyone was totally drained. Not willing to accept that this was just the way it had to be, Liz started researching and discovered Buzzy - a device that distracts from injection pain by confusing nerves with both temperature and vibration.

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Project WOW (Wear an Ostomy for the Weekend)

Wear an Ostomy for the Weekend Supplies at ImproveCareNow Community ConferenceProject WOW (Wear an Ostomy for the Weekend) was created to help the ImproveCareNow Community learn more about what patients wearing ostomies go through on a daily basis. The Parent Working Group (PWG) and Patient Advisory Council (PAC) wanted to create a learning opportunity where we could work together. We knew this project would only give a snapshot of what patients go through because participants wouldn't have had surgery and the ostomy wouldn't be functional. But we still believed it would be powerful because participants would be learning from perspective, spending some time "walking in patients' shoes", which is something often times difficult to accomplish and not easily seen.


What now?

I am just over three months into my first year of medical school. I love it, really, I do. Every day is different and a new kind of challenge, causing me to both embrace and restrict change as I become and remember who I am.

Of course, one contributing factor to who I am is my ulcerative colitis. It rarely feels like a Disease, with a capital D. It is less of a dinosaur than a dandelion these days. Usually barely noticeable but ubiquitous in my fields of thought. But then, the slightest trigger of an associated idea or memory creates a flurry of emotion I can’t help but acknowledge.


ImproveCareNow is Knowledge & Sharing

Map showing the connectedness of ImproveCareNow centers across the network

What is ImproveCareNow? ImproveCareNow is a Learning Health Network. OK, great. But what does that mean and why is it important? 


ImproveCareNow Registry (ICN2) Used to Characterize Extent of Disease at Presentation of Ulcerative Colitis

The variation in presentation of ulcerative colitis (UC) during childhood has been incompletely characterized. In October, at the NASPGHAN Annual Meeting, Dr. Jeremy Adler (@jeremyadlermd) presented an abstract on behalf of ImproveCareNow, which highlights the characterization of the extent of disease at presentation of UC in a large cohort of pediatric patients using data from the ImproveCareNow pediatric IBD registry (known as “ICN2”).


Kids with IBD are encouraged to get a flu shot

Nurse giving a young girl a vaccine
Yearly flu shots are encouraged for kids with Crohn's disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD), and those who are closest to them. The flu can be very serious in someone taking immunosuppressant drugs and/or who has a chronic illness. Also, because the flu is a viral infection it can stimulate the immune system and could cause a flare.

Notes from the Field - Cori's Story

Cori DavisEngagement is one of those things that just seems to come naturally to some people. If you believe in something and are excited about it, how can you not share your enthusiasm with others? That’s all engagement is really; sharing stories, passions and successes, and working together toward a mission.

 

My name is Cori and this is my story of working with ImproveCareNow (ICN) – engaging many different people in an effort to improve care & health for kids with IBD.

 

 


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