In February 2019, the ImproveCareNow Engagement Team surveyed CIRCLE community members to identify information, knowledge & know-how that could benefit others living with IBD and their families/caregivers. Specifically, we hoped to uncover resources and methods of sharing that would help us identify gaps in resources and information ImproveCareNow currently provides to the IBD community.

Seventy people took our survey, including patients with IBD and their parents/caregivers. We learned a great deal through our analysis of the survey results. At a high level, we were able to identify four key areas of need:

  • parents and patients want information and resources surrounding different facets of IBD, including:
    • general disease information
    • information on treatment
    • resources for helping them manage IBD
  • respondents want information and resources to support psychosocial health, including:
    • to promote emotional wellbeing
    • access to patient and caregiver support groups
  • respondents expressed difficulty with insurance coverage and financial issues
  • respondents shared diverse preferences for how and where they receive information

Below we will dive more deeply into the area of “Information and resources surrounding different facets of IBD.” Where possible, we will link directly to useful resources that may help address some of the specific needs expressed through the survey. We know there is more work to do, and this is the start of identifying resources that can help our community. If you know of any resources that address these topics, please contact us so we can share seamlessly.

Information and resources surrounding different facets of IBD

Survey respondents indicated they wanted general information about IBD, including disease symptoms, long-term outcomes, and research. The type of information being sought ranged from general to highly specific. Here are some examples:

One parent wrote “Information – it’s overwhelming at diagnosis, but the more I read & research, the more confident I feel for long term treatment” and another wished they had “an easy-to-read handbook that lists all possible symptoms of Crohn’s [disease].

Another person wrote that “an intro to IBD class” would be helpful, and another described how “a chart to show what poop looks like and when to contact the doctor” would be useful.

One respondent wrote about the need for “accurate statistics regarding remission outcomes both short and long term.” Another saw importance of having access to the “latest research in new treatments.

Information regarding treatment and care came up multiple times, including treatment options, medications and side effects, and pain, as well as issues related to the clinical care team and care coordination.

One parent wrote “we had questions about treatment options”, whereas another had questions about “how to control the myriad of side effects” from a particular medication. One parent wrote about questions regarding “. . . specific lab results and what that meant from the doctor’s perspective and if we needed to make any changes to my child’s treatment.

Pain was described in many responses, including “belly pain”, “joint pain”, the need for a “pain medicine that doesn’t harm bowels and non-addictive,” and advice on what to do when “your child doesn’t want to go to school” because they are experiencing pain. Care coordination was described by one parent who wanted “a team of specialist[s] that worked together in one location: Gastroenterologist, dermatologist, ophthalmologist, nutritionist, rheumatologist.

Information about disease management, such as diet and nutrition, growth and weight gain, accommodations, and self-management/life skills was another area of need.

One parent identified “more information about diet” as important and another highlighted the importance of “dietary information that was not conflicting and more definitive . . .” Others expressed needs for “dietary suggestions and what really can work” in order to meet goals, such as “eating gluten free and still getting all needed nutrients and maintaining weight” and eating “more and therefore be able to grow more.” (ICN Resources: Patient Perspectives: Nutrition & IBD; Disordered Eating Toolkit)

School was the focus of many responses. One parent identified information needs relating to “accommodations for dorms/apartments for school” while others wrote that “info on registering with college disabilities office and patient rights” would be helpful, as well as “a tool kit for teachers and school administrators” to accommodate students with IBD. One respondent described needing information on “living on your own with IBD, self-care, and life skills” and another wrote that an “app that tracks health, diet, medications” would be helpful. (ICN Resource: IBD Accommodations; College & IBD)

This post was written by David Hartley, with input from Mary Havens, Chris Keck and Sarah Nocito. It is the first in a multi-post series where the ICN Engagement Team explores the results of their "Content Prioritization Survey" - better known as ImproveCareNow's effort to get the right information into the right people's hands at the right time(s) so they have What is Needed, When it's Needed (#WINWIN). All posts in this series will be tagged with #WINWIN so you can find the series by visiting: improvecarenow.org/tags/_winwin 💚💙
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