Establishing a NSW HEN registry

Abstract

G. Pang, W. Andrews, C. Clarkson, J. Dwyer, M. Holyday, H. Jackson, H. Kepreotes, K. Lambert, M. Paton, K. Robertson, B. Scott, E. Stradling, P. Talbot, S. Wagner, K. Ward, GMCT HEN Group Greater Metropolitan Clinical Taskforce, Sydney, NSW, Australia. Home enteral nutrition (HEN) is the provision of nutrition support therapy either by mouth or by feeding tube into the gastrointestinal tract in the home setting. The use of HEN is growing rapidly in Australia and worldwide. Currently, little is known about HEN patients and HEN services in NSW. The Home Enteral Nutrition (HEN) Project is funded by the Greater Metropolitan Clinical Taskforce (GMCT), NSW Health with the aim of achieving equitable funding and access to HEN services for all patients across NSW. A state-wide data collection and reporting system for NSW HEN patients (NSW HEN Register) has been established to monitor trends in HEN therapy in NSW. A minimum dataset was identified and used to collect data for a one-month audit of new and existing HEN patients treated in NSW public healthcare facilities. From the audit it was estimated that approximately 8,000-10,000 patients receive HEN therapy in NSW. The NSW HEN register uses Teleform technology. Fax forms enable data to be digitally processed into the NSW HEN Register Database. The database will be managed centrally by GMCT HEN and will provide data back to reporting sites on their HEN patients. This data collection will assist in planning for future HEN services in NSW. At present this is the only large HEN population registry in Australia. This model could be used to establish a national HEN register or audit of HEN patients nationally.