Posted by Sami Kennedy on December 05, 2012
As a kid, my favorite wintertime activity was sledding on this giant hill in front of my house. I remember dragging my little red sled up the hill through the heavy snow, occasionally giving up and looking to my dad to carry me the rest of the way. Coping with IBD can feel like an uphill climb too. Learning to live with a chronic illness can be scary and complicated, and it takes effort and energy. It can feel like taking a big step into the unknown with little feet, and the uncertainty can deter many patients and families from taking active roles on their care teams. I had so many questions after my diagnosis. What does this really mean? What will my life be like now? What do I do?
Living Well with IBD: A Self-Management Program endeavors to answer those questions and more. This handbook, accessible digitally and in print, aims to simplify an abundance of information that patients and families need to acquaint themselves with to become engaged and informed members of their care teams. Both formats are colorful, interactive, easy-to-read, and can be consulted whenever necessary.
There are sections that walk a patient and their family through understanding their diagnosis, various treatment options, common procedures, growth and nutrition information, available resources, and the importance of treatment adherence, and so much more. Each section clearly lays out each member of the care team's responsibilities, emphasizing that smart management of IBD is a true team effort. Short-answer and multiple choice questions at the end of each section encourage patients to review the information and consider any questions or concerns. There is plenty of room for patients to write questions and to-do lists to help keep track of their responsibilities. Downloadable or tear-away forms are also available to assist young patients in managing their condition on a daily basis. The ultimate goal of the handbook is engaging patients and supporting successful self-management: encouraging young patients to take active roles in their care.
Most importantly, the handbook recognizes a truth I struggled to comprehend after my diagnosis: there is no cookie-cutter IBD patient. Every patient is different and every diagnosis is different, so the handbook has been made to be easily customizable for each particular patient and care team's needs. Certain sections may be used frequently, whereas others may be used sparingly or temporarily skipped. The handbook's greatest asset as a learning tool is its flexibility in either format - it is broad in scope, while narrow enough to relate to a specific patient's journey. The handbook may be used as a tool during and/or in-between office visits, depending on a patient and provider's needs.
Living Well with IBD: A Self-Management Program has been developed under the guidance of Wallace Crandall, MD at Nationwide Children's Hospital in Columbus, Ohio. The printable PDF version is available for download on the ImproveCareNow website, and is printed for you at some participating ImproveCareNow centers. The digital interactive version is in the final stages of development.
As a patient, I recognize the importance of good self-management tools. They enhance patient education, activation, and treatment adherence. Any tool that simplifies the complexities of living as a young person with a chronic illness is welcome in my book, and Living Well with IBD: A Self-Management Program succeeds. Living as a child or teen with a chronic illness isn't easy, but tools like this make the jump into self-management a bit less of a leap.