Canadian Home Total Parenteral Nutrition Registry: Preliminary Data on the Patient Population

Abstract

BACKGROUND: Long-term administration of home total parenteral nutrition (HTPN) has permitted patients with chronic intestinal failure to survive for prolonged periods of time. However, HTPN is associated with numerous complications, all of which increase morbidity and mortality. In Canada, a comprehensive review of the HTPN population has never been performed.OBJECTIVES: To report on the demographics, current HTPN practice and related complications in the Canadian HTPN population.METHODS: This was a cross-sectional study. Five HTPN programs in Canada participated. Patients’ data were entered by the programs’ TPN team into a Web site-based registry. A unique confidential record was created for each patient. Data were then downloaded into a Microsoft Excel (Microsoft Corp, USA) spreadsheet and imported into SPSS (SPSS Inc, USA) for statistical analysis.RESULTS: One hundred fifty patients were entered into the registry (37.9% men and 62.1% women). The mean (± SD) age was 53.0±14 years and the duration requiring HTPN was 70.1±78.1 months. The mean body mass index before the onset of HTPN was 19.8±5.0 kg/m2. The primary indication for HTPN was short bowel syndrome (60%) secondary to Crohn’s disease (51.1%), followed by mesenteric ischemia (23.9%). Complications: over one year, 62.7% of patients were hospitalized at least once, with 44% of hospitalizations related to TPN. In addition, 28.6% of patients had at least one catheter sepsis (double-lumen more than single-lumen; P=0.025) and 50% had at least one catheter change. Abnormal liver enzymes were documented in 27.4% of patients and metabolic bone disease in 60% of patients, and the mean Karnofsky score was 63.CONCLUSIONS: In the present population sample, the data suggest that HTPN is associated with significant complications and health care utilization. These results support the use of a Canadian HTPN registry to better define the HTPN population, and to monitor complications for quality assurance and future research.