title: Outcome Indicators for Home Parenteral Nutrition Care: Point of View From Adult Patients With Benign Disease.
abstract: OBJECTIVE
  Patients receiving home parenteral nutrition (HPN) deserve a high-quality and patient-centered care. Patient-centered care can be delivered only if the patient's priorities and concerns are known. Therefore, the aim is to identify the top 3 most important outcome indicators according to patients' perspectives and the differences between several centers, HPN regimen, and HPN experience.
  
  
  METHODS
  A questionnaire, based on previously developed outcome indicators, was translated into the mother tongue using forward-backward translation and distributed to adult HPN patients with benign disease in March 2013. To identify differences, a Kruskal-Wallis or Mann-Whitney test was performed with GraphPad Prism (significance level <.05) when applicable.
  
  
  RESULTS
  Nine centers over 8 countries (300 patients) participated. The top 3 outcome indicators for patients were (1) incidence of catheter-related infection (CRI), (2) survival, and (3) quality of life (QoL). Between the participating centers, significant differences on rating were found for 5 outcome indicators (catheter obstruction, .015; weight, .002; energy, .010; fear, <.001; and independence, .010). The independence outcome indicator (.050) was considered less important for experienced (>2 years HPN) vs less experienced patients. For this outcome indicator, patients' view also differed significantly based on number of HPN days per week (.0103).
  
  
  CONCLUSIONS
  A cohort of HPN patients identified incidence of CRI, survival, and QoL as the most important outcome indicators for their care; however, there were significant differences between the participating centers. For one outcome indicator (independence), there were significant differences based on experience and regimen.
authors.affiliation: Department of Pharmaceutical and Pharmacological Sciences, KULeuven and University Hospitals Leuven, Belgium mira.dreesen@uzleuven.be.
authors.forename: Mira
authors.initials: M
authors.lastname: Dreesen
authors.affiliation: Center for Chronic Intestinal Failure, Department of Gastroenterology and Internal Medicine, St Orsola-Malpighi Hospital, University of Bologna, Italy.
authors.forename: Loris
authors.initials: L
authors.lastname: Pironi
authors.affiliation: Intestinal Failure Unit, Department of Gastroenterology and Hepatology, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands.
authors.forename: Geert
authors.initials: G
authors.lastname: Wanten
authors.affiliation: Stanley Dudrick's Memorial Hospital, General and Oncology Surgery Unit, Skawina, Poland.
authors.forename: Kinga
authors.initials: K
authors.lastname: Szczepanek
authors.affiliation: Department of Pharmaceutical and Pharmacological Sciences, KULeuven and University Hospitals Leuven, Belgium.
authors.forename: Veerle
authors.initials: V
authors.lastname: Foulon
authors.affiliation: Department of Pharmaceutical and Pharmacological Sciences, KULeuven and University Hospitals Leuven, Belgium.
authors.forename: Ludo
authors.initials: L
authors.lastname: Willems
authors.affiliation: NZ, National Intestinal Failure Service, Auckland City Hospital, Auckland, New Zealand.
authors.forename: Lynn
authors.initials: L
authors.lastname: Gillanders
authors.affiliation: Department of Gastroenterology and Nutrition Support, Beaujon Hospital, University of Paris VII, Clichy, France.
authors.forename: Francisca
authors.initials: F
authors.lastname: Joly
authors.affiliation: Nutrition Unit, Hospital General Universitario Gregorio Marañón, Madrid, Spain.
authors.forename: Cristina
authors.initials: C
authors.lastname: Cuerda
authors.affiliation: Department of Gastroenterology, Erasme University Hospital, Brussels, Belgium.
authors.forename: Andre
authors.initials: A
authors.lastname: Van Gossum
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D055499:Catheter-Related Infections / Q000453:epidemiology* / Q000209:etiology; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D015994:Incidence; D008297:Male; D008875:Middle Aged; D016331:Parenteral Nutrition, Home / Q000009:adverse effects*; D018802:Patient-Centered Care / Q000379:methods; D011788:Quality of Life; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D055815:Young Adult
keywords: home nutrition support; long-term care; nutrition; nutrition support practice; outcomes research/quality