Quality of life and nutritional state in patients on home enteral tube feeding

OBJECTIVE: We assessed quality of life (QOL) in patients on home enteral tube feeding (HETF). The data should contribute to ethically justified decision making. METHODS: We used a prospective cross-sectional study (study 1) in 155 consecutive patients and a prospective longitudinal study (study 2) with a follow-up of 4 mo in 56 patients. QOL was assessed by proxy rating (Karnofsky and Spitzer indices) and self-rating (European Organization for Research and Treatment of Cancer [EORTC] QLQ C30) extended by a specific module. RESULTS: In study 1, weight losses 3 mo before HETF were 10.5 +/- 8.4% and 7.9 +/- 6.3% in competent (P < 0.05) and non-competent (P < 0,05) patients, respectively. The prevalences of severe malnutrition and weight loss were 50% and 73%, respectively. When compared with EORTC reference data for a general population, QOL was lower in HETF patients. The lowest QOL was seen in non-competent patients. Nutrition status explained up to 13% of the variance in QOL. In study 2, nutrition status stabilized or increased slightly in response to HETF. This was true for competent and non-competent patients and for patients with malignant and benign diseases. Concomitantly, physical functioning improved, whereas fatigue decreased. QOL increased in response to HETF in competent and non-competent patients, and 50% of the non-competent patients became competent. CONCLUSIONS: Measures of QOL research can be used in HETF patients. QOL is reduced in patients on HETF. Part of this effect is explained by malnutrition. HETF can prevent further weight loss and improve some aspects of QOL, thus allowing physicians to focus on patients.