Isabella Marrale
Pronouns: She her
Research Mentor(s): Irene Carter
Research Mentor School/College/Department: Pediatric Surgery Section / Medicine
Program: UROP
Session: Session 3 (11:00am – 11:50am)
Authors: Isabella Marrale, Irene Carter, Meghan Arnold
Abstract
This study proposes to quantify and describe the quality of life (QoL) of pediatric intestinal failure (PIF) patients, and to identify the medical and socio-economic factors that impact this quality of life, using data from multiple multidisciplinary intestinal failure centers across the U.S. and Canada. PIF is defined by any child with inadequate bowel function requiring parenteral nutrition for at least 60 out of 74 consecutive days at any point secondary to anatomic short bowel length or problems with intestinal motility or absorption. Parenteral Nutrition (PN) Support is defined as intravenous infusion of any macronutrient for nutritional supplementation or intravenous fluids for the provision of hydration/electrolytes/micronutrients at least 2 days/week. Health related QoL is becoming increasingly important, as medical advancements continue to increase life expectancies in various illnesses. QoL encompasses the physical, psychological, and social well-being of a person, and previous studies focusing on health related QoL show that providers have a limited understanding of the QoL of their patients, demonstrating a need for further research. As mortality rates in PIF patients have significantly dropped over the past 3-4 decades (Modi, Diamond, Goulet), long term morbidity rather than survival has come into focus as the outcome of interest. This presentation will focus on how the responses to the Family Impact Module – a survey filled out by the parent/guardian of the PIF patient – differs between families with infants and families with older children experiencing PIF. Data points will be restricted to patients treated for PIF at CS Mott Children’s Hospital in Ann Arbor, Michigan.
