Long-term follow-up of patients receiving home enteral nutrition

Abstract

Home enteral nutrition (HEN) is an expanding specialized discipline of nutritonal support. There is a paucity of literature on the development of home enteral nutrition programs. In a provincial HEN administered by a multidisciplinary team of dietitians, nurses, pharmacists, and physicians, a long-term database has been developed. The database collection was started on January 1, 1997 and analyzed to July I, 1999. Results: Over a 30 months 462 HEN patients (55%M, 45%F) have been followed for a mean of 310 days/pt. Of the 225 patients (49%) who have been discharged from the program, 39% have died from their primary disease and 42% were able to resume their oral intake. The following are the patient demographics: AGE 60 32%, MOST COMMON INDICATIONS FOR HEN Dysphagia 68%,Failure to thrive 16% Malabsorption 4%, Motility Disorder 3%, Gi Fistula 2%. PRIMARY DIAGNOSIS Neurologic 37% ENT 20% Gastrointestinal 16%, Genetic 10%, Respiratory 3%. Compared with January 1st 1997, the increase in active HEN patients has been 13%, 30%,40%, 59%, and 70% over the past 6, 12, 18, 24 and 30 months respectively. Conclusions: Based on our experience with a multidisciplinary , regional HEN program, we would recommend the following for centers developing such a program. I) Team members (nurses, dietitians, physicians) should have expertise with pediatric and geriatric populations and with neurologic, gastrointestinal, and ENT disorders. Dysphagia is the most common reason for initiating HEN and therefore collaboration with a swallowing disorders clinic is recommended. 3) Centers should budget for program growth. While a significant number of patients die from their underlying disease or are able to resume oral intake, a large number remain on the program for a prolonged period of time. Because of this and the increasing use of enteral feeding tubes, growth is likely to continue.