{"id":15043,"date":"2013-07-19T10:22:36","date_gmt":"2013-07-19T14:22:36","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=15043"},"modified":"2013-07-20T13:55:18","modified_gmt":"2013-07-20T17:55:18","slug":"our-childs-disease-is-our-disease","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2013\/07\/our-childs-disease-is-our-disease.html","title":{"rendered":"A parent speaks: “Our child’s disease is OUR disease”"},"content":{"rendered":"

Susannah: On June 14, 2013, I attended the National Meeting on Promoting and Sustaining Collaborative Networks in Pediatrics where we discussed topics covered in a special issue of Pediatrics<\/a>, among other initiatives and trends. Justin Vandergrift was one of the speakers and his words were so compelling that I asked if we could publish them here.\u00a0<\/em><\/p>\n

e-Patient Dave: This post is about ImproveCareNow, which Susannah wrote about<\/a> two years ago:<\/em><\/p>\n

“…some very promising quality improvement work among pediatric gastroenterologists. If you\u2019re not yet familiar with it, please see: ‘ImproveCareNow<\/a>: The development of a pediatric inflammatory bowel disease improvement network’ … The really exciting piece for me is that ImproveCareNow is now adding online patient networks to their toolbox, as part of the Collaborative Chronic Care Network or\u00a0C3N Project<\/a>.”<\/em><\/p><\/blockquote>\n

As you read this, please think about our movement, in which “networked patients [and families] shift from being mere passengers to responsible drivers of their care.” What does Justin’s experience with ImproveCareNow teach us?
\n<\/em>______<\/p>\n

Hello, I am Justin Vandergrift, a parent from Levine Children’s Hospital<\/a> in Charlotte, North Carolina. Last August I was asked by the IBD <\/a>Team at Levine to be their parent representative for ImproveCareNow<\/a>.<\/p>\n

Before relaying my thoughts and ideas, I wanted to share my story and ultimately why I am standing before you today.<\/p>\n

My daughter Kathryn is 11 years old and will turn 12 this summer.\u00a0 She IS<\/b> my reason for being here.\u00a0 Kathryn was diagnosed with Crohn’s disease in August 2011 shortly after her 10th birthday.\u00a0 She has endured changes to her body from steroids; countless procedures, XRAYS, scans and two surgeries.\u00a0 Her medication list is more than I can remember.\u00a0 Frankly, if I were in her shoes, at her age, I would cower in the corner hoping no one would see me.\u00a0 But somehow, through it all, Kathryn remains cheerful and greets life with warmth and enthusiasm.\u00a0 If she can face HER<\/b> world with a smile – then I HAVE TO DO<\/b> everything I can to help.\u00a0 Her strength inspires me and SHE IS<\/b> the reason I am here.<\/p>\n

All of the other parents here are living with their child’s disease on a daily basis.\u00a0 We face each day with hope and promise but also with an awareness of uncertainty.\u00a0 Along with Kathryn there are 16,000 kids at 52 ImproveCareNow centers living with Inflammatory Bowel Disease. I stand before you today, one of several parents, as a voice for these patients and their families.<\/p>\n

\u00a0WE ARE ALL here to be the voices of the voiceless – representing tens of thousands of chronically ill children.<\/b><\/p>\n

The medical community is renowned for their acronyms, phrases and jargon to make explaining ideas easier.\u00a0 However in one case the simplification of a term detracts from its real meaning.\u00a0 This word is parent.\u00a0 Yes I am a parent – but in the end I am simply just a dad. ALL<\/b> of us parents are simply a mom or dad with a common goal – WE JUST WANT OUR KIDS TO STOP HURTING!\u00a0<\/b><\/p>\n

We want the pain, tears and frustration to go away.\u00a0 There is so much life to live and we want to give our kids the highest quality of life possible.\u00a0 I am confident that every person in this room wants ALL<\/b> of our Kathryns to stop hurting too.<\/p>\n

Since ImproveCareNow began in 2007, the network has raised the remission rate for children with Inflammatory Bowel Disease from 50% to 77%.<\/p>\n

With 16,000 patients at ImproveCareNow centers, this means 4,300 more kids that are feeling well, are fully active, and have no IBD symptoms.<\/p>\n

Network-wide performance measures tracked by ImproveCareNow centers show:<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 92% of patients are off prednisone (14,720 kids don\u2019t have to worry about getting moon face)<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 90% of patients have satisfactory nutritional status (14,400 kids getting enough nutrition to grow and develop)<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 91% of patients have satisfactory growth status<\/p>\n

My center, Levine Children\u2019s, has been involved with ImproveCareNow for approximately three years.\u00a0 The benefits are overwhelming for such a short period of time.<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 93% of Levine\u2019s IBD patients are off of prednisone,<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 85% have satisfactory nutritional status and<\/p>\n

–\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 92% have satisfactory growth status.<\/p>\n

Like many other IBD families, these statistics represent battles my family fights every single day.\u00a0 Seeing improvements in the data is one thing, but understanding the potential impact of these advances on my daughter\u2019s life gives me hope.\u00a0 There is promise that she, and the thousands of other kids like her<\/b>, can live a healthy, normal life with Crohn\u2019s in the margins.<\/p>\n

As a parent one the most interesting benefits of being a part of ImproveCareNow is the focus on truly involving parent partners.\u00a0 Each center is encouraged to have a parent partner as part of their Quality Improvement Team.\u00a0 Parent partners have the unique opportunity to help drive the changes made at hospitals and care centers, and watch how those changes impact the lives of our families and the next family who gets and IBD diagnosis.\u00a0 Our child’s disease is OUR<\/b> disease; we live their ups and downs as if they are our own.<\/p>\n

I was incredibly fortunate to have Levine to “buy into me.” \u00a0Together we have accomplished more than I EVER<\/b> thought possible.\u00a0 The support and acceptance of my care center is amazing and I am certain we have improved the quality of care for families in our area.<\/p>\n

Because Crohn\u2019s and ulcerative colitis are diseases of the GI tract, patients often suffer in silence.\u00a0 However, locally we\u2019ve seen Levine\u2019s patients open up and get involved with the IBD community.\u00a0 The Charlotte Take Steps Walk, a fundraising walk for the Crohn\u2019s and Colitis Foundation of America, was held a few weeks ago with an estimated 1,500 walkers.\u00a0 Levine Children\u2019s had the largest number of patient-inspired participants than any other facility at the walk.\u00a0 The IBD team at Levine has increased parent\/patient engagement by creating a bi-monthly newsletter dedicated to education and put together care-kits for families admitted to the hospital.<\/p>\n

Across the ImproveCareNow Network we\u2019ve seen the acceleration of patient\/parent engagement through a variety of revolutionary ideas.\u00a0 Some centers have created mentoring programs where newly diagnosed families are buddied up with a veteran family for support and to help them navigate their IBD journey.\u00a0 Others centers have regular outings where IBD patients can come together and interact as typical kids.\u00a0 One center has monthly meetings where IBD experts share information with patients and families about new advances in the field of pediatric IBD.<\/p>\n

No matter what a center chooses to do to support patient engagement, the outcome is tremendous for the families.\u00a0 When Kathryn was diagnosed with Crohn\u2019s disease my wife and I felt like islands<\/b>.\u00a0 People heard my words as I described our life, but no one understood what the words meant.\u00a0 I remember that feeling of being completely scared and totally isolated.\u00a0 I remember watching my child suffer through the most horrifying pain.\u00a0 I remember the gut-wrenching feeling of utter helplessness as she up at me, with tear-filled hazel eyes and said \u2018Daddy PLEASE <\/b>make it stop\u2019, as I realized there was simply nothing I could do.<\/p>\n

But there is something I can do.\u00a0 Something every parent can do.\u00a0 We might not be able to help another parent take away their child\u2019s pain, but we can be there to hear their cries, listen to their stories and understand.<\/p>\n

Before closing I would like to pose four questions to you.<\/p>\n