Canadian home parenteral nutrition (HPN) registry: validation and patient outcomes.
BACKGROUND
In Canada, there are an estimated 400 home parenteral nutrition (HPN) patients. In 2006, a registry was created to gather patient outcome information. The aim of this study was to validate the registry and report on HPN patient outcomes.


METHODS
Several demographic, clinical parameters were collected. For the validation, paired t test and intraclass correlation coefficient (ICC) were used to assess agreement between repeat entries. For the outcome report, paired t test was used to assess changes, and survival analysis was performed using the Kaplan-Meier method. Results are expressed as mean ± SEM.


RESULTS
On validation, there was high correlation/agreement (P < .05) for most parameters except vascular access/line sepsis, liver disease (ultrasound, biopsy, diagnoses), and hospitalizations. For the outcome report, 96 patients had their data entered at 2.24 ± 0.11 years after baseline. Over the period, there was a significant reduction in PN calories (P = .001) and proteins (P < .001). There were no significant changes in nutrition parameters and laboratory results except for lower platelet counts (P = .028), lower plasma potassium (P = .030), and a trend toward an increase in bilirubin from 19.29 ± 4.65 to 29.06 ± 8.73 µmol/L (P = .071). The QOL decreased significantly over time (P < .001) and the survival on HPN was 17.67 ± 1.89 years.


CONCLUSIONS
The registry is a valid tool to assess several clinical parameters. On follow-up, HPN patients maintain good nutrition status while PN is reduced but do have a reduced quality of life.
University Health Network, Toronto General Hospital, Toronto, Ontario, Canada.
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Fernandes
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Kaila
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Jeejeebhoy
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Gramlich
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Armstrong
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Allard
D001663:Bilirubin / Q000097:blood; D002170:Canada; D005260:Female; D005500:Follow-Up Studies; D006760:Hospitalization; D006801:Humans; D008107:Liver Diseases / Q000209:etiology / Q000503:physiopathology; D008297:Male; D015596:Nutrition Assessment; D016331:Parenteral Nutrition, Home / Q000009:adverse effects / Q000379:methods*; D011188:Potassium / Q000097:blood; D011788:Quality of Life; D012042:Registries; D016896:Treatment Outcome
D001663:Bilirubin; D011188:Potassium