September 15, 2018
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CCF, caregiver organizations launch IBD caregiver survey

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The National Alliance for Caregiving, along with the Crohn’s & Colitis Foundation and ImproveCareNow, has launched a first-of-its-kind survey for caregivers of individuals with inflammatory bowel diseases, according to a press release.

The survey, which became available on Thursday, is seeking feedback from family caregivers of children and adults living with Crohn’s disease or ulcerative colitis, which, according to the press release, affects as many as 3 million Americans.

An independent advisory committee will review the survey questionnaire and data before its release.

Researchers at New Mexico State University will administer the survey and conduct the data analysis, in partnership with the National Alliance for Caregiving, Crohn’s & Colitis Foundation, and ImproveCareNow.

The organizations are encouraging patient advocacy communities to invite IBD caregivers to participate in the online survey.

After fielding, the data will be collected, cleaned, and aggregated into the final report, which, according to the press release, will be released in a Capitol Hill briefing to Congress, and distributed nationally and internationally.

“Because of the debilitating nature of these incurable diseases, caregivers are critical in helping patients cope with living with IBD,” Laura D. Wingate, senior vice president of Education, Support, & Advocacy at the Crohn’s & Colitis Foundation, said in the release. “Family caregivers provide more than just physical assistance, their role in IBD patient care is immense. This survey will provide us with insights into the traditional and nontraditional roles of caregivers in IBD and the affect their loved one’s disease has on their life.”

Steve Steiner, MD, a research committee co-chair at ImproveCareNow reiterated Wingate’s sentiments.

“The stress and emotional toll put on a caregiver can greatly impact the emotional wellbeing and health outcomes of children with IBD,” he said in the release. “We are excited to explore the challenges and contributions of caregivers in the IBD community.”