ImproveCareNow Clinicians


Information about the novel coronavirus (COVID -19) for IBD patients and families

SARS-CoV-2

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Many IBD patients and their families are concerned about the novel coronavirus (COVID-19) and the impact it may have on their lives, their care and their wellbeing. Please note: IBD patients and families seeking specific information about the novel coronavirus and their medical care are advised to communicate directly with their care team. While ImproveCareNow is not in the business of providing direct medical advice, we are in the business of connecting people, learning together and sharing information seamlessly. We'd like to share some information that may be useful to you:


Packing for College or Moving Out: Some Extra Items for the U-Haul

My patients sometimes like to discuss the “hassles” of preparing to enter the adult world and manage their own health. I run a transition education and co-management program through my center’s IBD clinic, where I try to help parents and patients begin to shift the daily regimen of medical behaviors from parent, to parent-patient, eventually to patient management with support. Part of our time together just includes talking out loud about the best and worst of growing up and launching into the world as young adults.


Knowledge is Power – Our IBD GROW event

Transition of care is a hot topic in our Pediatric Gastroenterology division. We have many patients with lifelong diagnoses, such as Inflammatory Bowel Disease, who will eventually need to move to adult care. In the past, transition and transfer of care have been a bit like an elephant in the room as patients near their 18th birthday. Questions are nervously broached by parents at the end of office visits: “How much longer will you see my son/daughter? Where do we go? What if we don’t want to see an adult doctor?” These encounters made our team realize that we needed to do a better job preparing patients and their parents for transition and transfer of care. The question was, where do we start?


A parent partner has incredibly enriched care at my center

Having a parent partner has incredibly enriched the care that our Pediatric Gastroenterology department provides to our patients and their families. It brings a fresh and enthusiastic perspective to our group meetings and has provided valuable feedback for our IBD informational packet that will be given to families.


Nationwide Children’s video series shares accurate, understandable, patient-friendly info about IBD

Getting accurate, understandable, patient-friendly information about IBD is not always easy. But what if other kids who actually have IBD told you about IBD anytime you wanted, and would only give you information that IBD experts felt was accurate? And what if the information they shared would only take a few minutes? That would be great, right? 


A GI’s perspective: Take steps to engage your IBD care team and find support

I’m Dr. Ashish Patel, Director of the Southwestern Pediatric IBD Center at Children’s HealthSM and Associate Professor of Pediatrics at UT Southwestern. As a physician, I’ve seen firsthand how important it is for patients and their families to have a positive, supportive partnership with their care providers.


What's the ICN Nursing Group up to?

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ICN Nursing Group brings together nurses from across the ICN Network. These nurses have years of IBD experience and aim to use these knowledge and insights to enhance patient care by identifying best practices in patient education, clinical nursing care and providing professional support to the Network.


Big Data Lead to a Bigger and Happier Boy

ImproveCareNow big data is thousands of little stories about children with Crohn’s disease and ulcerative colitis. Since 2007, the clinical remission rate of these children has increased from 55% to 78%–thousands more kids able to attend school regularly, play sports, do overnights with friends and be much happier.


Curators, Bridge Builders, and Advocates

Much about Thanksgiving is the same year to year. People come together with friends and family and community, often enjoying a large meal together, and spending the day doing something meaningful—whether doing community service; watching football; or sitting around talking, telling stories, and recovering from the large meal. But while many things about this day of togetherness and gratitude remain constant each year, our personal roles may shift. Sometimes we host the meal at our home. We are the “leaders” for the day, developing the menu, doing most of the cooking, deciding when the group will eat, assigning tasks in the kitchen, and choosing which football game will be on. Other times, we are a guest in someone’s home, often traveling some distance, we are told which side dish to bring, when to arrive, and which activities are planned for the day. Sometimes we are grateful to play a supporting role in the production, and other times it can be hard to sit back and watch events unfold differently than they would if we were in charge. Maybe the mashed potatoes don’t taste just like our Thanksgiving memories, maybe our family always took a walk after eating and we’re antsy to do the same, and maybe the wrong football game is on TV (or we just can’t stand watching football at all).  Or maybe it’s just perfect—just the break we needed from running the show – and we bask in the glow of learning new ways of doing things and watching others shine.


The future of IBD research is in your hands

ImproveCareNow has partnered with Patient PrioritiesThe goal of medical research is to find answers that will improve the lives of patients. But how can we be sure the answers really matter if we don’t ask patients what they want and need to know?

ImproveCareNow is committed to supporting research that represents patient and family perspectives. As part of our funding from the Patient Centered Outcomes Research Institute and the US Agency for Healthcare Research and Quality, we are working with leading health care researchers from Children's Hospital of Philadelphia, Katherine Bevans, PhD and Chris Forrest, MD, PhD (selected publications by Dr. Forrest) to use new ways to engage everyone in the IBD community in setting our direction for learning. They have created a website called Patient Priorities to find out what YOU want and need to know about Crohn’s disease and ulcerative colitis (IBD). You don’t need any research experience to participate.

You will be asked to recall moments during your/your child’s diagnosis and/or treatment when you wanted more information, or had questions that were not answered. Maybe you had questions when comparing two treatment options, or making the decision to end a particular treatment. Any difficult moment when you needed more clarity and information is important for researchers to know about.

Responses to the 10-minute survey are anonymous and will be grouped with many other responses to develop a list of “Learning Objectives.”  Some Learning Objectives may be answered using existing research. Where there is good research to answer common questions, ImproveCareNow will be making more tools and resources for families available through care centers and in our online communities: Facebook, Twitter, here on LOOP, CIRCLE, the ICN Exchange and Smart Patients. Those Learning Objectives that are unanswered and require more research will be added to the ImproveCareNow research agenda.

We’ve heard from many patients with IBD and their parents. It would be great to hear from many more to be sure the Learning Objectives really represent a wide variety of experiences.

Here’s your survey: http://bit.ly/lrnobjs

This is an important opportunity for us to shape the future of IBD research. We will be sharing our results and what we’ve learned along the way, so you can see how we’re outsmarting IBD together.


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