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 th e 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 (2 4M, 14F) aged 56 +/- 5 years who had been on HEN for more than 2 months (me an 25 +/- 5 months). Patients or close relatives were asked to answer a sub jective 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 th e time in the hospital, in 54% of cases because of HEN-related complication s. Analysis of the generic questionnaires revealed poorer quality of life p arameters in comparison to a general population, although better results we re sometimes observed in younger patients (under 45 years), patients withou t cancer, and patients with more than one care-giver. Nevertheless, the pat ients' 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 pati ents who score better in some quality of life dimensions can be identified. Most patients describe an improvement in their quality of life following t he initiation of HEN that needs to be confirmed by a prospective study. (C) 2000 Harcourt Publishers Ltd.