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Pediatric Short Bowel Syndrome and Quality of Life: Closing the Gap Between Clinician Perceptions and Patient and Family Experiences (SA40)

Saturday, April 22 • 4:15 PM – 5:45 PM PT

In Person SessionVirtual SessionPediatric Content Included


  1. Demonstrate understanding of the multidimensional construct of quality of life for patients and families impacted by pediatric-onset short bowel syndrome (SBS)
  2. Utilize appropriate tools to evaluate quality of life and guide conversation focused on outcomes important to patients and families
  3. Integrate patient and family perspectives and priorities in quality of life research and clinical practice


A Patient's Perspective of the Impact of Living with Pediatric-Onset SBS for Three Decades on Quality of Life
Swapna Kakani, MPH, Healthcare Advocate, Swapna Speaks, Huntsville, AL

A Parent's Perspectives on the Impacts of Pediatric Short Bowel Syndrome on Parent and Family Life - The Use of SBS-Specific Quality of Life Questionnaires
Marie Neumann, MA, Project Researcher, University of Nebraska Medical Center, Omaha, NE

A Parent's Perspective of the Impact of Pediatric Short Bowel Syndrome on Their Child's Life
Jessica Allen, PhD, Associate Professor of Psychology, Birmingham-Southern College, Birmingham, AL

Marion Winkler, PhD, RD, LDN, CNSC, Professor of Surgery and Surgical Nutrition Specialist, Alpert Medical School of Brown University/Rhode Island Hospital, Providence, RI

CE Credit: 1.5 hours
Level: Intermediate
UAN: JA0002345-0000-23-078-L99-P