Posted by Stephanie Hartke on April 18, 2023
Video based on a patient's social media post.
Discussing surgery for IBD can be challenging for patients, parents, and providers
A team of patients, parents, doctors, psychologists, and nurses from Dayton Children's Hospital created a tool with financial and network resources from the ImproveCareNow Patient and Parent Innovation Fund, made possible with support the David R. Clare and Margaret C. Clare Foundation, to help patients and families navigate the complex medical decision-making process related to considering surgery in IBD.
Since it was introduced at the Spring 2022 Live Online Community Conference, this interactive, shared decision-making (SDM) virtual tool has been viewed by hundreds of IBD patients and providers around the world. Yet the utility and experience of using this virtual tool remains unknown for patients, parents, and providers.
An ImproveCareNow research study is underway!
Following three years of clinical observations, the creators of this virtual tool are examining the perceived impact, utility, and effectiveness of a shared decision-making (SDM) tool for surgery in pediatric IBD.
The research team aims to understand the lived experiences of key stakeholder groups (patients, parents, and providers) who have used this shared decision-making (SDM) virtual tool. The research team hopes that this study will provide insights from patients, parents, and providers about the impact, utility, and effectiveness of this virtual tool for pediatric IBD patients considering surgery moving forward.
Who is eligible to participate?
- Patients aged 12-24 years old diagnosed with IBD who have used the ImproveCareNow IBD Surgery Shared-Decision Making (SDM) Virtual Tool
- Parents of patients diagnosed with IBD whose children have been recommended, considered, or undergone surgery by a healthcare provider and have used the IBD Surgery Shared-Decision Making (SDM) Virtual Tool
- Pediatric gastroenterologists or advanced practice practitioners actively caring for patients with IBD who have viewed the IBD Surgery Shared-Decision Making (SDM) Virtual Tool in its entirety.
What does participation in the study look like?
If you decide to participate in this research study, you will be asked to complete one of the following:
💚 Patients will be asked to complete a one-time phone or video interview (depending on patient preference) that is expected to take less than 60 minutes.
💙 Parents will complete a one-time phone or video interview (depending on parent preference) that is expected to take less than 60 minutes.
Patients and/or parents will have a brief consenting/scheduling call with a member of the research team before the interview.
💚 Providers will complete a cross-sectional REDCap survey that is expected to take less than 10 minutes.
What are the risks and benefits?
- The risks associated with participating in this study are minimal. There are no known physical risks, and there is a slight risk of mild psychological distress when discussing surgery and ostomies. Participants may stop and discontinue the study if distressed at any time.
- There is no immediate direct benefit in participating in this study. Ultimately, the research team anticipates that improved understanding of the current impact, utility, and effectiveness of the IBD Shared-Decision Making (SDM) Virtual Tool will allow researchers and clinicians to best use the virtual tool moving forward.
Compensation
To thank patients or parents for their time in completing interviews, they will be mailed $25 gift cards. Providers will not be compensated for study participation.
Click below for next steps!
💚 PATIENT/PARENT INTERVIEW
💙 PROVIDER SURVEY
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Everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:
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Invite someone to stay #InTheLOOP with IBD stories on the ICN blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint
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Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea
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Invite a parent or family member of a child with IBD to join the Parent/Family Advisory Council - "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria
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Invite someone to download free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint
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Invite someone to Join Our CIRCLE - "Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa
