Outcome Indicators for Home Parenteral Nutrition Care: Point of View From Adult Patients With Benign Disease. (10th June 2014)

• Record Type: Journal Article
• Authors: Dreesen, Mira; Pironi, Loris; Wanten, Geert; Szczepanek, Kinga; Foulon, Veerle; Willems, Ludo; Gillanders, Lynn; Joly, Francisca; Cuerda, Cristina; Van Gossum, Andre
• Is Part Of: JPEN, Journal of parenteral and enteral nutrition. Volume 39:Number 7(2015)
• Page Start: 828
• Page End: 836
• Publication Date: 2014-06-10
• Subjects: outcomes research/quality -- nutrition support practice -- home nutrition support -- nutrition -- long‐term care; Parenteral feeding -- Periodicals; Enteral feeding -- Periodicals; 615.85484
• DOI: 10.1177/0148607114536926
• Languages: English
• ISSNs: 0148-6071

Abstract

Abstract : Background and Aims : 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). Conclusion : 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.