At April’s Live Online Community Conference (LOCC), Dayton Children’s introduced the Should I have IBD surgery? shared decision-making webtool and Dear Ostomy video. These resources are key components of an IBD Surgery Shared Decision-Making Toolkit that the Dayton team created using an ImproveCareNow (ICN) Innovation Fund award, made possible with support from the Clare Foundation. The toolkit generated a lot of excitement and questions, so project leaders, Dr. Kelly Sandberg and parent Shellie Doub took some time to answer to the most frequently asked questions.

Questions about the IBD Surgery Shared-Decision Making Toolkit:

What is included in the Toolkit?

Currently, there are three components:

💚 a patient-facing Should I have IBD surgery? webtool 

💙 the Dear Ostomy animated video

💚 a provider guide with information about who will best benefit from the resources in the toolkit, who might be included in a shared decision-making team, a possible pathway to surgery, and a template for introducing the webtool to the patient. Because we know that every care center is unique and has different resources, the toolkit is designed to be flexible. And because we know providers are busy, we kept it brief!

When will the Toolkit be available for use?

The provider guide, webtool, and video are available now on the Tools page of the ICN website.

💚 the Should I have IBD surgery? webtool can be accessed directly at this link:

💙 the Dear Ostomy video can be watched here:

💚 the provider guide found here:

Will the toolkit be available in Spanish or other languages?

We would love to offer the toolkit in other languages, and we would be thrilled to partner with other groups and ICN centers that can help with logistics and cost. 

Who was involved in creating the toolkit?

Too many people to count! Parents, patients, GI and surgery teams, psychology, a shared decision-making consultant, a certified Wound and Ostomy Care Nurse, marketing, animators, illustrators, and web developers. One thing that made our process unique is that the project was co-led by a parent/physician dyad acting as project managers. We cannot say enough how much we appreciate the support of Dayton Children’s leadership, ImproveCareNow, and the help of other care centers in creating this toolkit.

How do you plan to measure the effectiveness of the toolkit? 

We are in the process of developing and seeking funding for a qualitative or mixed-methods analysis project. Stay tuned for more to come on this!

Questions about the Should I have IBD surgery? webtool:

Which patients will benefit from using the webtool?

The webtool is recommended for patients ages 12 and over who do not need to make an emergent decision about surgery. While the webtool can be adapted and used for patients who present with an acute need for surgery, our intent is that the they will be used over a period of time to empower patients to build a care team that meets their needs and address family concerns about how this will affect a patient’s lifestyle or body image. Ideally, after the idea of surgery has been introduced, the patient should have the opportunity to explore the tool on their own and then share their thoughts and feelings with the care team via patient portal or email.

How long will it take patients to complete the webtool?

It really depends on the patient! We recommend setting aside 10-30 minutes to complete the questions at home. We made it easy for users to scroll through and answer questions, but we also included lots of links, images, and information for those who want to explore and learn more. Answers are not stored, but the patient can re-visit the site as needed for more information.

The webtool seems really thorough. What if a patient does not want to answer all the questions?

The webtool allows patients to skip questions, but if a patient leaves the webtool before printing or saving a summary, answers submitted in their present session will not be stored.

How does the website address the privacy of patients using the webtool?

The webtool is built on the ImproveCareNow website. Answers submitted in the process of completing the webtool are never stored or tracked by ICN. For this reason, the webtool should be completed in one sitting. For added security, we recommend that users close their browser after printing or saving a PDF of their responses.

If webtool responses are not stored, how does the provider get a copy?

At the end of the webtool questionnaire, a patient can print or save their responses as a PDF. It is then up to the patient to decide with whom they will share their answers. In the provider guide, we offer a template that providers can adapt and use to inform the patient of the best way to share the PDF file. We recommend sharing through a secure patient portal if patients are able to upload documents to the system.

How will providers benefit from the webtool?

We hope that the webtool leads to improved understanding of and discussion about patient knowledge and values, as well as feelings and fears about surgery. We also hope it will lead families to identify and embrace needed care team members.

What is the reading level of the webtool?

The webtool has an overall 5th grade reading level. To ensure it makes sense and is easy to use, the webtool has been reviewed by patients, parents, teachers, a copywriter, and strangers to the project. Our writers also used the Flesch Reading Ease and Flesch-Kincaide Grade Level programs to confirm reading level. Medical and surgical terms are explained with pop-outs that include simple illustrations and easy definitions, so we feel the tool offers high-quality information in an accessible way.

Can the webtool be used with adult patients?

The webtool was not created for nor tested with adult patients. That being said, we do believe it could be used with adult patients. The language in the tool is respectfully simple and includes links to reputable sources including the Crohn’s & Colitis Foundation and the United Ostomy Association of America for mature patients who desire more information.

What device do you recommend for using the webtool?

Currently, the webtool is designed for use on a computer web browser and works best in Google Chrome. In order to keep cost low, making the tool available on mobile devices as an app was not an option. We would love to see the tool be adapted for mobile phone or tablet use in the future.

Questions about the Dear Ostomy video:

How did you create the video?

An ICN PAC member wrote a letter celebrating her ostomy and posted it on Facebook. The letter was so poignant and pertinent to our project, that our team felt it would be a perfect complement to our webtool. We reached out with the idea to turn her social media post into an animated video and the rest is history! It took a little work to adapt a long Facebook post into a one minute video, but it was definitely worth the effort. It is one of our favorite parts of the toolkit and can be shared as a stand-alone tool with patients of any age. 

Can the video be used separately from the webtool?

Yes! The Dear Ostomy video can be found on the ICN website. We believe it can be useful for patients of any age who are in any stage of decision-making. 

💚 the Dear Ostomy video can be watched here:


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