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publications & presentations
As the project grows, we will be publishing our research findings in various outlets to ensure that patients, families, and clinicians have access to this data.
2023
Research article: "Exploring the impact of pediatric short bowel syndrome on parent well-being using a disease-specific pilot survey" in Nutrition in Clinical Practice.
Marie L. Neumann, Jessica Y Allen, Amy Ladner, Swapna Kakani, Meaghann Weaver, and David F. Mercer
->full article available for free here.
Research article: "Advocating for a patient- and family centered care approach to management of short bowel syndrome" in Nutrition in Clinical Practice, May 2023.
Vanessa J Kumpf, Marie L. Neumann, and Swapna Kakani
->full article available for free here.
Conference talk: "Incorporating the Patient and Family in Research: Parent and Provider Perspective" presented at the Congress for Intestinal Rehabilitation and Transplant Association (CIRTA), June 2023
Poster presentation: "Where do SBS/IF patients and caregivers go to receive information, and what do they want more information about: findings from a cross-sectional community-driven survey." Presented at the Congress for Intestinal Rehabilitation and Transplant Association (CIRTA), June 2023
Conference talk: "Pediatric Short Bowel Syndrome and Quality of Life: Closing the Gap between Clinician Perceptions and Patient and Family Experiences" at the Nutrition Science & Practice Conference (ASPEN) April 2023.
2022
Poster presentation: "Taking care of the caregiver: exploring the impacts of pediatric short bowel syndrome on parent wellbeing using a disease-specific pilot survey". Presented at the Pediatric Intestinal Failure and Rehabilitation Symposium (PIFRS), September-October 2022
Marie L. Neumann, Swapna Kakani, Jessica Y. Allen, Amy Ladner, Meghan Hall Rauen, Meaghann S. Weaver, and David F. Mercer
Research article: "A beautiful struggle: parent-perceived impact of short bowel syndrome on child and family wellbeing." in the Jounral of Pediatric Surgery. September 2022
Marie L. Neumann, Jessica Y. Allen, Swapna Kakani, Amy Ladner, Meghan Hall Rauen, Meaghann S. Weaver, and David F. Mercer.
-> full article available for free here
Poster Presentation: "Transitioning in and transitioning out: parent and adult patient experiences with healthcare for intestinal failure" Presented at the Nutrition Science & Practice Conference (ASPEN), March 2022
Marie L. Neumann, Swapna Kakani, Jessica Y. Allen, Amy Ladner, Meghan Hall Rauen, Meaghann S. Weaver, and David F. Mercer
Poster Presentation: "Beyond clinical outcomes: using a disease-specific pilot survey to explore parent perceptions of wellbeing for children with short bowel syndrome." Presented at the Nutrition Science & Practice Conference (ASPEN), March 2022.
Marie L. Neumann, Jessica Y. Allen, Swapna Kakani, AmyLadner, Meghan Hall Rauen, Meaghann S. Weaver, and David F. Mercer
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