Stacy A Kahn1, Rita Gorawara-Bhat, David T Rubin. 1. University of Chicago, Inflammatory Bowel Disease Center, Department of Pediatrics, Section of Pediatric Gastroenterology, Hepatology, & Nutrition, MacLean Center for Clinical Medical Ethics, Chicago, Illinois 60637, USA. skahn@peds.bsd.uchicago.edu
Abstract
BACKGROUND: Fecal bacteriotherapy (FB) has been proposed as a safe and effective alternative treatment for a number of gastrointestinal conditions including ulcerative colitis (UC). We performed a qualitative study to explore the attitudes and concerns of adult patients and parents of children with UC regarding FB as a potential treatment. METHODS: We conducted six focus groups for adult patients with UC and parents of children with UC or indeterminate colitis. Participants were asked about their perceptions of and interest in FB as a treatment for UC. Sessions were recorded, transcribed, and reviewed to identify domains, themes, and major concepts. RESULTS: The focus groups included 15 adult patients and seven parents of children with colitis. We identified five major domains pertaining to FB: impressions of treatment, benefits, risks, potential mechanisms, and social concerns. All but one participant expressed interest in FB and several wished it were already available. Participants compared FB to probiotics, felt it was "natural," easier than current therapies, and with donor screening would be safe. Although initial distaste and the "yuck factor" were uniformly mentioned, these concerns were outweighed by perceived benefits. CONCLUSION: This is the first study to examine important ethical and social issues surrounding FB as a treatment for UC. Given adequate supporting research, donor selection, and screening, adult patients and parents of children with UC will consider FB and are eager for it to become available. These findings have important implications for future microbiome-based treatments.
BACKGROUND: Fecal bacteriotherapy (FB) has been proposed as a safe and effective alternative treatment for a number of gastrointestinal conditions including ulcerative colitis (UC). We performed a qualitative study to explore the attitudes and concerns of adult patients and parents of children with UC regarding FB as a potential treatment. METHODS: We conducted six focus groups for adult patients with UC and parents of children with UC or indeterminate colitis. Participants were asked about their perceptions of and interest in FB as a treatment for UC. Sessions were recorded, transcribed, and reviewed to identify domains, themes, and major concepts. RESULTS: The focus groups included 15 adult patients and seven parents of children with colitis. We identified five major domains pertaining to FB: impressions of treatment, benefits, risks, potential mechanisms, and social concerns. All but one participant expressed interest in FB and several wished it were already available. Participants compared FB to probiotics, felt it was "natural," easier than current therapies, and with donor screening would be safe. Although initial distaste and the "yuck factor" were uniformly mentioned, these concerns were outweighed by perceived benefits. CONCLUSION: This is the first study to examine important ethical and social issues surrounding FB as a treatment for UC. Given adequate supporting research, donor selection, and screening, adult patients and parents of children with UC will consider FB and are eager for it to become available. These findings have important implications for future microbiome-based treatments.
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