ImproveCareNow Ibd


ImproveCareNow Registry (ICN2) Provides Insight into Crohn’s Disease Complications

Perianal disease is an important complication of Crohn’s disease in children. In May at Digestive Diseases Week 2015, a meeting of nearly 15,000 gastroenterologists from around the world, Dr. Jeremy Adler (@jeremyadlermd) presented research investigating instances of perianal disease (perianal fistulas, fissures and other perianal lesions) in pediatric Crohn’s disease, using data from the ImproveCareNow pediatric IBD registry (known as “ICN2”).

 

Identifying Perianal Crohn's Disease FINALUsing data from ICN2, Adler’s research team identified racial and regional differences in the development of perianal disease across multiple centers in the ImproveCareNow Network. Their research has shed light on when perianal disease most commonly occurs (early in pediatric Crohn’s disease) and suggests that early therapy should be aimed at fistula prevention. They concluded that the ICN2 registry is a valuable tool for population-based studies (like this one, which included data from many patients with IBD, across many different geographic areas), and suggest that more studies like this one be conducted to identify and evaluate preventative therapies for complications of Inflammatory Bowel Disease (like perianal disease).

 

This novel pediatric IBD research highlights the power of data, carefully collected and curated over time, to answer questions about complex conditions such as Crohn’s disease and ulcerative colitis and to shine light on ways we can work to improve the care and the health of patients in the near term.

 

ICN2 is the largest and fastest growing pediatric IBD registry in the world, with data from over 19,000 patients with IBD and 115,000 visits as of May 2015. The ImproveCareNow Network currently includes 75 participating pediatric IBD centers in 34 states and the District of Columbia and two in England, with nearly 45% of Crohn’s disease and ulcerative colitis patients cared for by US pediatric gastroenterologists. The purpose of ImproveCareNow is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis by building a sustainable collaborative chronic care network, enabling patients, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge. Data in the ImproveCareNow registry is used for improvement, research and innovation.

 

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Editor's note: The ImproveCareNow registry (ICN2) has grown dramatically over the past several years, and now, from the research standpoint, we are beginning to see the fruits of that labor. Jeremy Adler and colleagues have used the registry to carefully describe a specific phenotype of pediatric Crohn's disease across the network. We are only beginning to scratch the surface in utilizing not only the registry, but also the rich community network upon which ImproveCareNow is built. More and different types of research efforts are coming, and hopefully, the number of studies will continue to grow as quickly as the number of centers and patients have grown within the network.


New Co-Chairs to Lead the PAC

IMG_2301Outgoing Patient Advisory Council (PAC) Co-Chairs - Jennie David and Sami Kennedy, who co-wrote "What We Wish Our Parents Knew" - have announced their successors! Alex Jofriet, who is committed to turning his Crohn's diagnosis into a light for others to follow and Bianca Siedlaczek, who is excited to continue her patient advocacy career with ImproveCareNow. Keep reading for personal introductions from the new PAC co-chairs!



Meet Alex Jofriet!

 

Alex Jofriet in the ICN Superhero cape at Spring 2015 Community ConferenceHi, my name is Alex. I was diagnosed with Crohn’s Disease at age nine. It took many years, about eight after diagnosis, for me to find remission. At diagnosis, I was one of those shy, studious kids who sat in the classroom, mostly invisible to my peers and I liked that. My diagnosis of Crohn’s Disease threatened that invisibility and it took me about five years to accept my disease and open up about what I was going through.

 

Now, looking back, that seems like long forgotten history as I have gone from wanting to be invisible to being involved in many advocacy endeavors. My involvement in advocacy led me to ImproveCareNow (ICN), which I have been involved in for the past 4 years. What has kept me involved with ICN is their focus on the whole IBD patient. As co-chair, I hope to add to this "whole patient" focus by increasing the amount of peer support for patients in the network through a universal mentoring system. I am appreciative of all ICN has done and continues to do and am super excited to get started!



Meet Bianca Siedlaczek!

 

Bianca with her osotmy bag out and the words Hi, my name is Bianca! I was diagnosed with Crohn's Disease about 7 years ago, when I was 9 years old. In the past 7 years, I have been through many hospitalizations, many flares, one surgery, one year of remission, and much more. Every one of my experiences with Crohn’s Disease, through the years, has facilitated the growth of my passion for being a patient advocate. Over the past year and a half, ImproveCareNow has given me the chance to fulfill my passion for being an advocate. From the beginning, when I came to my first Learning Session with my center in Michigan, I  loved what ICN was doing to improve patient care and how the network went about doing so.

 

I look forward to transitioning from being a patient scholar to becoming one of the Patient Advisory Council’s Co-chairs. I am beyond excited to take this next step in my “advocacy career.” I cannot wait to continue working alongside the many centers involved with ICN and ICN’s staff. To say the least I am very excited to get started!

 

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The Patient Advisory Council (PAC) brings together patient advocates in ImproveCareNow as partners to create a network for pediatric IBD patient engagement. They create, co-create, and advise the creation of innovations to facilitate improvement in pediatric IBD care and quality of life for children and young adults living with IBD. The PAC welcomes passionate young adult patients (14 years and older) to join. To learn more or join please email [email protected]

 

 


Mindfulness Based Cognitive Therapy and pediatric IBD

Did you catch the article in HuffPost Health News about a large-scale comparison between the efficacy of Mindfulness Based Cognitive Therapy (MBCT) and anti-depressants?

This area, MBCT, is a growing interest of mine and I’m hoping to attend some trainings on it. I have informal training on mindfulness and use it myself, to great benefit! Here’s what I would say to someone else…


Parker's Crohn's Diagnosis - One Step at a Time

Parker going on a zip-line adventure before Crohn's diagnosisParker is an energetic, blonde haired, little boy. Just like many boys his age in Vermont, Parker enjoys skiing, bike rides, grass-stained jeans, and his new puppy Bailey. During the summer of 2014 this perfectly healthy heart-throb of a boy was crippled with abdominal pain, fatigue, and weight loss. By the end of summer all of these horrible symptoms culminated in a diagnosis of Crohn’s disease at the blissfully innocent age of 7. As his family was coming to grips with life with a chronic incurable illness, Parker’s symptoms got worse. He was quickly admitted to the University of Vermont Medical Center and received his first dose of infusion medications to fight Crohn’s.

 

“I don't want this for him, there must be a mistake, Parker is my rock” his Mom, Keri remembers thinking. “As a parent you go through the motions and the emotions of a diagnosis. I think the hardest moment for me as a mom, was being strong in front of him, for him, and the family, and then breaking down when I was alone. I remember one moment, late at night in the hospital walking down the hallway of the children's floor, and I stopped. I could barely walk any further. I had to keep telling myself, one step at a time, whatever it takes to move, feeling so isolated and alone, and from that moment on, that has been my motto. One moment at a time, one day at a time, and one step at a time, to just keep moving forward.”

 

After three long days as an inpatient at the UVM Children’s Hospital, Parker was discharged. He almost literally rode his scooter right out of the hospital. With a huge smile painted on his face, you could almost see the shackles of illness begin to release their grip. The energetic little boy that they knew was coming back to the surface with every giggle that squeaked out of him, and they kept moving forward – one step at a time.

 

As the ICN Improvement Coordinator here in Vermont, I first met Parker just a few weeks after his diagnosis. He was getting an infusion and I had come to talk with his family about ImproveCareNow. Whenever I approach patients and families about ImproveCareNow, my wish is that they will see this Network as a glimmer of hope in what is most likely a very dark place, and ultimately that they will want to get more involved.

 

Through the icy grip of winter, Keri and Parker continued coming to the Children’s Hospital every 8 weeks for infusions. During one of these otherwise uneventful visits, Keri asked about becoming more involved with Parker’s care. Although this question is short in length and easily rolls off the tongue, I feel it is one of the most powerful questions a family can ask. That uneventful visit ultimately lead to one of the most engaging and empowering conversations and relationships that either of us had experienced in a long time. Personally, I don’t think either of us could have ever imagined what was waiting just around the corner. It wasn’t what we were expecting but was exactly what we were hoping for, and certainly something we weren’t going to say no too. This project with Keri has evolved over time and has been a huge learning experience for everyone, but we’re going to keep moving forward – together – one step at a time.

 

I look forward to sharing more with you as our relationship, and indeed our adventure, unfolds.


Interview with Laura Mackner


Laura, can you give us a professional snapshot of who you are?


I have several roles and titles etc., as you can see by my signature. I primarily conduct research as an Investigator in the Center for Biobehavioral Health at Nationwide Children's (NCH). That's about 85% of my job.  I also do some clinical work, primarily with children with IBD, as a child psychologist working with the IBD team and in the Division of Pediatric Psychology at NCH.  This is primarily outpatient psychotherapy, although in the past I have also done inpatient consults and work in the GI Clinic.  Finally, I have an academic appointment at Ohio State University, in the College of Medicine in the Department of Pediatrics, providing training and supervision to psychology and GI interns, residents and fellows. What will you be sharing at the Community Conference?



I'll be leading a breakout session on peer mentoring and giving a presentation on psychosocial issues in pediatric IBD.


For the session on peer mentoring, I'll (1) discuss some of the research on mentoring programs and some of the "best practices" that have been developed from this research, (2) identify some practical resources for developing a mentoring program that exist, and (3) we'll spend most of the session discussing challenges specific to developing a peer mentoring program for youth with IBD.  I'll discuss the peer mentoring program I've been running at NCH, and I hope to brainstorm with the participants in the session about some of the challenges that all mentoring programs face (e.g., recruiting male mentors) as well as some of the challenges specific to IBD mentoring programs (e.g., confidentiality, mentor-mentee matching issues).  Jennie David and Isabelle Linguiti will be joining me to sharing their experiences with formal and informal mentoring and help with brainstorming as well.


For the presentation on psychosocial issues, I'll be discussing psychosocial issues that affect patients and families living with IBD, and how psychosocial issues can also affect health outcomes in IBD.   We know that IBD can affect pretty much any area of life, so I'll be reviewing the research on overall quality of life, emotions, social life, school, and family.  I'll also review research on the risk factors that have been identified that suggest which children are more likely to experience problems in these areas.  Then I'll discuss how psychosocial factors can affect IBD, and things we can do to address psychosocial issues that may also affect IBD. How does this session/focus pertain to parents?  Or how can parents use the information as part of our mission to help improve care.


For peer mentoring, we initially ran focus groups to develop our program, and our NCH parents had a lot of great ideas.  I'd love to hear from the ICN parents, and I hope the information provided in the session will be useful for any parents who are interested in developing a mentoring program.


For the presentation on psychosocial issues, parents certainly play a role in the psychosocial health of their children, and I'll specifically be discussing ways we might be able to improve psychosocial and physical health.




An update from the Patient Priorities team

ImproveCareNow has partnered with Patient PrioritiesThe IBD Learning Priorities project was designed to give young adults, parents and clinicians in the IBD community a chance to ask the questions they felt were most important in the treatment of IBD. Using an online survey, families and clinicians submitted over 200 questions - or 'learning objectives'. Common themes included diet, diagnosis and individual care needs.

 

 

 

These questions will help us further understand what information those who are impacted by IBD really need. We expect to find some of these questions already have answers. And where there there is good research to answer these common questions, ImproveCareNow will work to develop and share this knowledge through family-centered tools and resources. Those questions that do not have complete answers will help prioritize future pediatric IBD research.

 

Below are a few examples of the learning objectives received from families and clinicians like you!




    • Beyond enteral therapy, what is the role of diet in the maintenance of remission in IBD?

 

    • Is 6mp safe? Will it hurt her liver anymore than it already is?

 

    • We need more data on dual therapy with thiopurines and methotrexate. Specifically, will patients do better if these agents are started before starting biologics rather than starting them at the same time?



Stay connected with ImproveCareNow by joining our CIRCLE so we can send you updates on the continued progress of these important community-developed learning objectives and ensure you have access to the family-centered tools and information that are developed in response to some of these questions.


Buzzy: A small tool to help in a big way

Three years ago my son started on Humira in an attempt to get his Ulcerative Colitis into remission. Although it quickly became apparent that Humira was controlling his UC, my husband and I were struggling to successfully administer the drug. Our process consisted of 30 to 40 minutes of negotiation along with bribes and other unsuccessful attempts at minimizing the injection pain. We tried our best to allow our son to have some control over the situation by waiting for him to tell us when he was ready.  In the end, we were just getting frustrated.  That is when we found Buzzy.


Christian joins the Patient Advisory Council

PAC Member Christian HansenMy name is Christian Hanson and I am a sophomore at Brown University. I was diagnosed with Crohn’s disease at age ten and receive Remicade infusions at Boys Town Medical Center in Omaha, Nebraska. While Crohn’s so often feels like a heavy burden, there have been fleeting moments where my condition feels more like a blessing: Through this disease I have discovered a network of heroes who have overcome the trials of IBD and have been surrounded by a caring and compassionate network that spans the United States. I am joining the Patient Advocacy Council because I believe in their mission to magnify the voices of patients and advocate for those who cannot. I will be helping share, via CIRCLE eNewsletter, updates about the PAC and various projects related to patient engagement active throughout the ImproveCareNow Network. Feel free to contact me at [email protected] if you would like to learn more about the PAC or would like to speak with me regarding my personal experiences.


All the best,
Christian Hanson


What is Smart Patients? And why are we partnering?

Smart Patients logoThe team at Smart Patients has impressed us here at ImproveCareNow. They have proven themselves as experts in creating a culture and a space for generous, information-rich sharing which gives people living with chronic illnesses like Crohn's disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) a safe place to learn and share.

There are many social networks and online communities for IBD, but we have chosen to partner with the Smart Patients team because their custom-built, disease-specific forums offer a truly safe, warm and engaging experience for users. Smart Patients also offers conversation tagging, and clearly defined community norms, which means community members are highly likely to find the answers they need and highly unlikely to be trolled. And because the conversations are arranged using tags and completely searchable, you can always find what you’re looking for.

The Smart Patients team and ImproveCareNow have partnered to create an online IBD community that is supportive and also powerful. The Smart Patients IBD community has the power to improve health and health care systems through patient and family peer-to-peer learning.

Join the Smart Patients community for IBD today. Together, we can outsmart IBD!


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.


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