Marion F Winkler1, Rose Ann DiMaria-Ghalili2, Peggi Guenter3, Helaine E Resnick3, Lawrence Robinson4, Beth Lyman5, Carol Ireton-Jones6, Lillian Harvey Banchik7, Ezra Steiger8. 1. Rhode Island Hospital and Alpert Medical School of Brown University, Providence, Rhode Island, USA mwinkler@lifespan.org. 2. Drexel University, College of Nursing and Health Professions, Philadelphia, Pennsylvania, USA. 3. American Society for Parenteral and Enteral Nutrition, Silver Spring, Maryland, USA. 4. Collierville, Tennessee, USA. 5. Department of Gastroenterology, Children's Mercy Hospital, Kansas City, Missouri, USA. 6. Carrollton, Texas, USA. 7. New Hyde Park, New York, USA. 8. Digestive Disease Institute, Cleveland Clinic, Cleveland, Ohio, USA.
Abstract
BACKGROUND: Home parenteral nutrition (HPN) is a vital lifesaving therapy for patients who are unable to maintain weight, fluid balance, nutrition, and functional status via oral or enteral nutrition alone. There are few current data sources describing HPN prevalence, patient demographics, or long-term outcomes in the United States. OBJECTIVE: To describe demographics and baseline characteristics of patients receiving HPN therapy. METHODS: This is a descriptive analysis of data from the first cohort of HPN patients at time of enrollment in the SustainTM Registry between August 2011 and February 2014. RESULTS: There were 1251 patients enrolled from 29 sites. Eighty-five percent of patients were adults, with a mean age of 51.3 ± 15.3 years. Fifteen percent were pediatric, with a mean age of 4.9 ± 4.9 years. For both age groups, short-bowel syndrome was the most frequently reported HPN indication (24%). Adults most commonly had a peripherally inserted central catheter (47%) or a tunneled catheter (43%) for HPN administration. In contrast, most pediatric patients (72%) had a tunneled catheter. Most patients received parenteral nutrition daily and consumed some oral nutrition. Twenty-eight percent of all patients were expected to require HPN indefinitely. CONCLUSIONS: This is the first report of descriptive data from the Sustain Registry. The data reveal important characteristics of patients receiving HPN in 29 U.S. sites.
BACKGROUND: Home parenteral nutrition (HPN) is a vital lifesaving therapy for patients who are unable to maintain weight, fluid balance, nutrition, and functional status via oral or enteral nutrition alone. There are few current data sources describing HPN prevalence, patient demographics, or long-term outcomes in the United States. OBJECTIVE: To describe demographics and baseline characteristics of patients receiving HPN therapy. METHODS: This is a descriptive analysis of data from the first cohort of HPN patients at time of enrollment in the SustainTM Registry between August 2011 and February 2014. RESULTS: There were 1251 patients enrolled from 29 sites. Eighty-five percent of patients were adults, with a mean age of 51.3 ± 15.3 years. Fifteen percent were pediatric, with a mean age of 4.9 ± 4.9 years. For both age groups, short-bowel syndrome was the most frequently reported HPN indication (24%). Adults most commonly had a peripherally inserted central catheter (47%) or a tunneled catheter (43%) for HPN administration. In contrast, most pediatric patients (72%) had a tunneled catheter. Most patients received parenteral nutrition daily and consumed some oral nutrition. Twenty-eight percent of all patients were expected to require HPN indefinitely. CONCLUSIONS: This is the first report of descriptive data from the Sustain Registry. The data reveal important characteristics of patients receiving HPN in 29 U.S. sites.
Authors: Anne Marie Sowerbutts; Simon Lal; Jana Sremanakova; Andrew Clamp; Chris Todd; Gordon C Jayson; Antje Teubner; Anne-Marie Raftery; Eileen J Sutton; Lisa Hardy; Sorrel Burden Journal: Cochrane Database Syst Rev Date: 2018-08-10
Authors: Bram P Raphael; Caitlin Schumann; Sara Garrity-Gentille; Jennifer McClelland; Carolyn Rosa; Christina Tascione; Mary Gallotto; Melissa Takvorian-Bené; Alexandra N Carey; Patrick McCarthy; Christopher Duggan; Al Ozonoff Journal: Telemed J E Health Date: 2018-05-04 Impact factor: 3.536
Authors: Bram P Raphael; Maria Jorina; Mary Gallotto; Glendalis Grullon; Meghan Dalton; Melissa Takvorian-Bené; Christina Tascione; Carolyn Rosa; Jennifer McClelland; Megan Gray; Alexis K Potemkin; Courtney Glavin; Kathleen M Gura; Margaret K Murphy; Kierrah Leger; Judith Mahoney; Jessica Kerr; Al Ozonoff; Christopher P Duggan Journal: JPEN J Parenter Enteral Nutr Date: 2018-03-30 Impact factor: 4.016