Intestinal Failure - Considering Quality of Life

This presentation will focus on the subjective description of quality of life and factors that influence quality of life from the perspective of home parenteral nutrition consumers and patients with intestinal failure.  A new home parenteral nutrition - patient reported outcome questionnaire (HPN-PROQ) will be introduced with guidance for incorporating it into the medical or healthcare visit.   Communicating quality of life and therapy goals empowers patients to identify what is important and allows clinicians to delve deeper in the provision of holistic and empathetic care. 

Learning Objectives:

1. Define quality of life and factors influencing quality of life.
2. Introduce therapy-specific patient reported outcomes questionnaire
3. Discuss how to raise quality of life issues with physician or home care clinician.

Speaker: Marion Winkler, PhD, RD, LDN, CNSC 

Bio:  Marion Winkler, PhD, RD, LDN, CNSC is Professor of Surgery (Teaching Scholar) Brown University Alpert School of Medicine (Providence, RI) and a Surgical Nutrition Specialist in the Department of Surgery and Nutritional Support Service at Rhode Island Hospital.  Dr. Winkler  has over 35 years of experience in managing enteral and parenteral nutrition in acute care, critical care, and home care and has expertise in the nutritional management of short bowel syndrome.  Dr. Winkler received a BS in Nutrition from Case Western Reserve University (Cleveland Ohio), MS in Allied Health and Clinical Dietetic Research from the University of Connecticut, and PhD from Rutgers University (formerly University of Medicine & Dentistry of NJ).  She is a Past President of the American Society for Parenteral and Enteral Nutrition (ASPEN) and the ASPEN Rhoads Research Foundation.  Dr. Winkler serves as an Associate Editor for the Journal of Parenteral and Enteral Nutrition (JPEN) and on the editorial board for Journal of the Academy of Nutrition and Dietetics (JAND) and Topics in Clinical Nutrition.  She speaks nationally and internationally on topics including malnutrition, short bowel syndrome, and enteral and parenteral nutrition.  Dr. Winkler's research focuses on quality of life of home parenteral nutrition dependent patients and the validation and implementation of the Home Parenteral Nutrition Patient Reported Outcomes Questionnaire (HPN-PROQ).