Quality of life in long-term home enteral nutrition patients

Background and aims: Few data are available on the quality of life of home enteral nutrition (HEN) patients. This study was designed to assess both the quality of life of long-term HEN patients and the evolution of quality of life after initiation of HEN. Methods: Quality of life-related parameters were analysed in 38 patients (24M, 14F) aged 56 +/- 5 years who had been on HEN for more than 2 months (mean 25 +/- 5 months). Patients or close relatives were asked to answer a subjective assessment questionnaire, and patients with normal consciousness (n = 24) answered the self-administered SF-36 and EuroQol questionnaires. Results: Since the initiation of HEN, patients had spent 1.9 +/- 0.5% of the time in the hospital, in 54% of cases because of HEN-related complications. Analysis of the generic questionnaires revealed poorer quality of life parameters in comparison to a general population, although better results were sometimes observed in younger patients (under 45 years), patients without cancer, and patients with more than one care-giver. Nevertheless, the patients' subjective assessment of the changes in their quality of life since beginning HEN was generally good, with most patients reporting improved or stable mental and physical well-being. Conclusions: Quality of life is poor in HEN patients, but subgroups of patients who score better in some quality of life dimensions can be identified. Most patients describe an improvement in their quality of life following the initiation of HEN that needs to be confirmed by a prospective study. (C) 2000 Harcourt Publishers Ltd.