家庭肠外营养医疗结局指标：来自成年良性疾病患者的观点

　　背景与目的：患者接受家庭肠外营养（HPN）需要高质量和以患者为中心的医疗。只有当了解了患者的选择和顾虑的情况下，才可以执行以患者为中心的医疗。因此，本文旨在根据患者的观点和不同中心、HPN方案以及HPN经验的差异，确定最重要的3种结局指标。

　　方法：基于已有结局指标的调查问卷，采用正反向翻译方式被译为母语并发给2013年3月成年良性疾病HPN患者。使用GraphPad Prism进行Kruskal-Wallis或Mann-Whitney检验确定其差异性（P＜0.05有统计学意义）。

　　结果：8个国家9个中心（300例患者）参与。对患者而言，最主要的3种结局指标是（1）导管相关性感染（CRI）发生率；（2）生存率；（3）生活质量（QoL）。在参与中心之间，5种结局指标的率有显著差异（导管堵塞，0.015；体重，0.002；精力，0.010；恐惧，＜0.001；独立性，0.010）。与缺少经验患者相比，对于有经验患者（HPN＞2年）而言独立性结局指标（0.050）不那么重要。对于该结局指标，患者的观点因每周进行HPN次数不同也显著不同（0.0103）。

　　结论：对于HPN患者群体而言，CRI发生率、生存率以及QoL被认为医疗过程中最重要的结局指标；然而，不同参与中心之间却有显著差异。对于一种结局指标（独立性），常因经验和方案的不同而有显著不同。

JPEN J Parenter Enteral Nutr. 2015;39(7):828-36.

Outcome Indicators for Home Parenteral Nutrition Care: Point of View From Adult Patients With Benign Disease.

Dreesen M, Pironi L, Wanten G, Szczepanek K, Foulon V, Willems L, Gillanders L, Joly F, Cuerda C, Van Gossum A.

Department of Pharmaceutical and Pharmacological Sciences, KULeuven and University Hospitals Leuven, Belgium.

Center for Chronic Intestinal Failure, Department of Gastroenterology and Internal Medicine, St Orsola-Malpighi Hospital, University of Bologna, Italy.

Intestinal Failure Unit, Department of Gastroenterology and Hepatology, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands.

Stanley Dudrick's Memorial Hospital, General and Oncology Surgery Unit, Skawina, Poland.

NZ, National Intestinal Failure Service, Auckland City Hospital, Auckland, New Zealand.

Department of Gastroenterology and Nutrition Support, Beaujon Hospital, University of Paris VII, Clichy, France.

Nutrition Unit, Hospital General Universitario Gregorio Maranón, Madrid, Spain.

Department of Gastroenterology, Erasme University Hospital, Brussels, Belgium.

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.

KEYWORDS: home nutrition support; long-term care; nutrition; nutrition support practice; outcomes research/quality

PMID: 24917517

DOI: 10.1177/0148607114536926