Longitudinal assessment of outcome, health status, and changes in lifestyle associated with long-term home parenteral and enteral nutrition

Background: The purpose of this study was to assess the health status, frequency of therapy-related symptoms, and impact of home parenteral and enteral nutrition (HPEN) on lifestyle in patients who were stable and had nonmalignant diagnoses. Assessments were made at 2 time points, 3 years apart. Methods: Institutional review board approval was obtained. Adult HPEN patients self-completed a general health status questionnaire (SF-36) and a lifestyle-symptom questionnaire in 1993 and 1996. Demographic data relating to underlying disease state and infusion regimen were also collected. Results: Seventeen patients (7 men, 10 women; 13 receiving home parenteral nutrition [HPN] and 4 receiving home enteral nutrition [HEN]) participated in the study. The mean (SEM) duration of HPEN therapy at the start of the study was 7.1 (1.6) years. Although health status as assessed by SF-36 scores was lower in all categories when compared with age- and gender-matched control data from the general US population (p <.05), there was no significant difference in SF-36 scores between the 2 time periods (p >.05). Sleep, travel, and social activities were the most affected aspects of the patient's lifestyle. Conclusions: These data suggest that patients with nonmalignant underlying disease receiving HPEN maintain a stable health status over a prolonged period.