ImproveCareNow Research


Using ICN Data to Investigate Health Disparities in Children and Teens with Crohn's Disease

[Editor's note: One of the unique aspects of research in a large network such as ImproveCareNow (ICN) is the opportunity for collaboration.  Jennifer Dotson and Michele Cho both submitted protocols to the ICN Research Committee to study racial disparities in pediatric patients with IBD.  Both are young eager investigators.  The Research Committee helped make a connection, and the result has been the start of important collaborative research utilizing the ICN2 registry.  This work exemplifies the power of the ICN network: the power of people and the power of data.  I hope you enjoy reading about the outcomes of their work.  Steve Steiner, Co-Chair, ICN Research Committee]




Kids in a circle on the grassUsing ICN Data to Investigate Health Disparities in Children and Teens with Crohn's Disease

 

By Jennifer L. Dotson, MD, MPH and Michele Cho, MD

 

Health care differences due to race have been shown to contribute to suboptimal healthcare outcomes for minorities and low-income groups. Identifying differences among those at-risk is an essential step to improve healthcare delivery and ultimately outcomes, and to reduce costs for all patients. For our study, we wanted to look at racial differences during the initial presentation and medical management of children and teens with Crohn's disease. Specifically, we wanted to determine if there were differences in disease severity and treatment with medications between Black and White children at time of diagnosis. The ImproveCareNow (ICN) network gave us the opportunity to look at a large group of patients from across the country and was a valuable tool in facilitating this work. ICN contains data collected at the time of outpatient clinic visits and is able to track patients over time. Data was pulled from the ICN database for all patients under 21 years of age with clinic visit between September 2006 and October 2014. We then narrowed the list of patients by including only those that had a visit within 90 days of their initial Crohn’s diagnosis.

 

We are in the early stage of this study and would like to share some of our preliminary results.

 

There were 1728 patients (Black=222 (13%), White=1506 (87%)) from 46 sites included. The average age was 13 years and 62% were male. Black children had more Medicaid insurance (39% vs. 10%) than White children. There were no differences by nutritional status, body mass index, or growth status. There was no difference in disease activity based on the short Pediatric Crohn’s Disease Activity Index, however Black children had more severe disease based on Physician Global Assessment. 0.9% of Black children had perianal disease as compared to 0.5% of White children. Anti-TNFα therapy (medications such as Remicade or Humira) was more commonly prescribed for Black children (17% vs. 11%).

 

Racial and socioeconomic disparities have the potential to impact healthcare delivery and Crohn’s disease outcomes. This study identified several differences among newly diagnosed children and teens with Crohn’s within an outpatient quality improvement network. Specifically, Black children were more likely to receive treatment with anti-TNFα therapy than White children. This difference does not appear to be explained by differences in age, growth, nutrition, perianal disease or standardized disease severity scores, but rather by subjective assessment of disease severity and/or consideration of additional information such as endoscopic appearance that is not accounted for by the short Pediatric Crohn’s Disease Activity Index.

 

ICN helped make this research project a reality by providing a rich data set and facilitating a successful collaboration of two young physician scientists. Realizing we had similar research interests in health disparities, we decided to combine our efforts and focus on a single, large project together. We are delighted to be working together on this, along with our mentor team, and are thankful for the encouragement by the ICN network.

 

Jennifer L. Dotson, MD, MPH is a pediatric gastroenterologist and research studying racial disaprities in IBD care using the ImproveCareNow registry.Jennifer Dotson, MD, MPH, is a pediatric gastroenterologist and principal investigator in the Center for Innovation in Pediatric Practice at The Research Institute at Nationwide Children's Hospital, Columbus, Ohio. She conducts clinical research focusing on improving healthcare delivery and reducing healthcare disparities, and outcomes-based research in children with inflammatory bowel disease (IBD). Her interests are studying hardships and barriers to care, and assessing potential health system solutions from the patient/caregiver perspective that impact clinical outcomes for children with IBD. When she is not taking care of patients and conducting research, she loves traveling with her family and spending time doing activities outdoors (hiking, kayaking, etc.).

 

Michele Cho, MD is a pediatric gastroenterology and research studying racial disaprities in pediatric IBD care using the ImproveCareNow registry.Michele Cho, MD, is a pediatric gastroenterologist working in the greater Chicago area. She is part of the Center for Children’s Digestive Health and is the physician lead for ICN at her site at the Advocate Children’s Hospital in Park Ridge, IL. Outside of work, she enjoys running and participating in other outdoor activities. She is looking forward to summertime in Chicago.


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.


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.


ICN Survey Research - Let's Get Started!

What are the research assets of ImproveCareNow?


Certainly the large and rapidly growing database of patient information is beginning to be tapped as a research resource.

But the ICN community itself is a powerful resource as well!


The Research Committee has received several applications to conduct survey research. After asking the ICN community for feedback, the infrastructure is now in place to begin gathering a list of survey recipients, and we need you to sign up!

Why should you participate in survey research?



    • Your views are important, and you can make a contribution to advancing knowledge and building a stronger network.

 

    • Surveys are an important way to learn more about things such as research prioritization, trends in diagnosis and treatment, and how to build a better network.

 

    • You support your colleagues with your participation!




"Survey - based research within ICN gives us the ability to gauge how pediatric GI practitioners approach specific aspects of IBD patient care in a quantifiable manner. This augments our "real world" understanding of the practices and attitudes of health care providers within ICN and therefore, can highlight areas of clinical practice we can target in our quality improvement efforts." - Sandra C. Kim, M.D.


Because we recognize the flood of emails you already receive, the Research Committee elected to create an opt-in mechanism that will allow investigators to target survey research only to those who want to participate. Your ICN key contact person has the ability to add or edit the contact information of all your team members (including all of your providers) in the ICN Contact Management System. Simply have your key contact select the Survey Study List button for all team members who want to participate!

ImproveCareNow participants can sign up for survey research in the Contact Management System

Our success in survey research will depend on getting a large cohort of the ICN community involved - don't delay - it's time to opt-in!

Steve Steiner
Co-Chair, ICN Research Committee


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.


ImproveCareNow Comparative Effectiveness Research study is published in Pediatrics and highlighted by AGA

Dr. Richard Colletti, Executive Network Director for ImproveCareNow, announced earlier this month that an innovative study by ImproveCareNow, using the ImproveCareNow registry database ("ICN2"), has been published in Pediatrics. In addition, the article is being highlighted by the American Gastroenterological Society (AGA). Below are the abstract and the AGA highlights. Congratulations to all of the ImproveCareNow community members, including patients, parents, clinicians, researchers and all committed improvers, who made this possible.


Enteral Therapy as a treatment for Crohn's disease


[Editor's note: This article was originally published in CIRCLE May-June 2013]


Enteral therapy refers to providing nutrition as a formula rather than by eating a regular diet. Enteral therapy has been shown to be effective in inducing, and perhaps maintaining, remission for pediatric patients with Crohn's disease. Enteral therapy does not have the side effects seen with drug treatment, and can improve growth, unlike corticosteroids, which have many known side effects. Although used very little in the United States, enteral therapy is commonly used abroad, including many European countries and Japan.


Over the years, several methods of administering enteral therapy have been evaluated, leading to variation in treatment. In 2012, the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) formed the Enteral Nutrition Working Group to review the use of enteral nutrition therapy in pediatric Crohn's disease, which summarized previous research and offered recommendations for physicians.


Drinking FormulaHistorically, enteral therapy was given through a feeding tube, and this is still done at many centers. However, drinking the formula is also an effective option. Studies have used both specialized nutrition formulas (in which the protein has been broken down to into smaller pieces) and non-prescription over-the-counter formulas (in which protein is not broken down). Both approaches appear to be equally effective, an important finding since over-the-counter formulas taste better and are less expensive.


The majority of the research has shown that enteral therapy is effective when taken as the sole source of nutrition (that means the patient can't eat any food), and this approach was recommended by the NASPGHAN Enteral Nutrition Working Group. However, recently a study published by Children's Hospital of Philadelphia showed that enteral therapy protocol is still effective when a small amount of food (less than 20% of the calories) is taken at the same time.


The way enteral therapy works is unclear. Theories include that it may help to provide the body with important nutrients and better overall nutrition, eliminate an unknown dietary substance that causes an immune response, or alter the bacteria found in the intestines.


A perceived barrier to enteral therapy is that the treatment may be demanding for physicians, families, and patients. For example it may be difficult to start, expensive, create a need for a feeding tube, or be displeasing to patients. Nationwide Children's Hospital is developing and testing a simple enteral therapy protocol which could be started very quickly and could be used at other GI centers. They plan to work with families and patients to reduce the perceived barriers via education on cost issues and payment options, and by developing a mentoring program. If successful, the protocol could significantly decrease the number of newly diagnosed patients with Crohn's disease who are initially treated with corticosteroids. Stay tuned.


Jen Smith, MS, RD, LD, LMT, Clinical Dietitian
Nationwide Children's Hospital, Columbus, Ohio




Sometimes you don’t know what you’ve got till it’s gone…


The announcement from Daniel McLinden that the ICN Exchange was back up.

 

Recently, the ICN Exchange needed to undergo maintenance unexpectedly for two days. Some people in the ImproveCareNow Network probably noticed it more than others. I know that as someone who has come to rely on it to keep up with what centers are working on and looking at, I was keenly aware of its absence.  So you can imagine how thrilling it was when it came back online!

 

Now that the Exchange is back up and running (and better than ever - with plans and resources in place to prevent such outages in the future!) it occurs to me that even a quick glance at the Exchange clearly shows the richness, diversity, vibrancy—and the multifaceted dynamics of our community.

 

When I glanced at the Exchange today this is what I saw:

 

Children's Hospital of The King's Daughters' DIGMA model demo video from the Spring 2014 Learning SessionImproveCareNow centers, like Children's Hospital of The King's Daughters, jumping in and collaborating with parents, patients, and other centers to make sure that we are all learning together!
Call for clinicians to sign up for a focus group to dicuss what has worked and what hasn't worked when trying to get patients and families involved in QI work at ImproveCareNow centers.

 

Opportunities that highlight how much we really, really want and need to learn from each other so we can collaborate even better!

 

The first ever announcement for a ImproveCareNow Dietician webinar Multidisciplinary partners, like the RD group, are staying connected with each other and getting organized so they can The new online 90 day goals tracker for ImproveCareNow centers to track and monitor their Improvement project goals and progress quarterlytake on projects that will build their visibility and leadership in ImproveCareNow.

 

ImproveCareNow QI teams are becoming even more accountable and transparent in their day-to-day QI work.

 

The Parent Working Group of ImproveCareNow is now setting and working on 90 Day Goals and in the spirit of transparency is sharing them with the whole NetworkParent Partners are setting their 90 day goals, tracking their progress and keeping the Network informed!The Patient Advisory Council request to ImproveCareNow participants to co-produce an Ostomy Toolkit for patients with permenant or temporary ostomies.

 

And finally, amazing patients around the country are teaching us more and more every day.


 

And that is just a quick glance! So thank you to everyone who has been a part of helping us build this vibrant community. I, for one, can’t wait to see where the community goes next!



The ICN Exchange is an internal knowledge-sharing platform that the ImproveCareNow Network uses to communicate, collaborate and innovate across the miles. Clinicians, Researchers, Patients, Families and Improvers are able to log into the ICN Exchange and share seamlessly and steal shamelessly!  The ICN Exchange has enabled ImproveCareNow to extend our “all teach, all learn” collaborative approach to medicine far beyond our monthly webinars and twice-annual Learning Session. It allows us to identify ideas and best practices in pediatric IBD care and introduce them into the care delivery process much faster—improving care for our patients now.


Parents as partners in care

One of the joys of working with the ImproveCareNow Network is seeing the results of co-production introduced more broadly to a learning community. At the same time, communicating what this is all about can be tricky – the idea that patients and clinicians can actually be partners (in health, care, improvement, and research) - is such a paradigm shift.  In fomenting this culture change, we have come to a deep appreciation of story-telling, art, and other creative expression as a powerful way of communicating beyond the hard data. That's why it's so breathtaking when we see this come along:


https://twitter.com/michaelseid11/status/448458248627027969

Justin, who made this video, is a parent in the ImproveCareNow network.  Collaborating with other parents and with some (minor) input from ImproveCareNow staff, he distills, in less than 90 seconds, this movement to its essence so much better than my feeble words could do.


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