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Lookup NU author(s): Colette Kirk, Professor Mark PearceORCiD, Professor David Jones, Dr Nicholas Thompson, Emeritus Professor John Mathers
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2026 The Author(s). Background & aims: Home parenteral nutrition (HPN) is life-sustaining for chronic intestinal failure; however, both intestinal failure itself and the demands of long-term HPN are associated with symptoms, complications and treatment burden that may impair quality of life. This study evaluated health-related QoL (HRQoL) in adults receiving long-term HPN and examined associations with sociodemographic, clinical, biochemical and nutritional factors. Methods: Baseline data were analysed from a prospective multicentre cohort study across three UK HPN centres. Adults (≥18 years) receiving HPN for benign disease completed the EuroQol-5D-5L (EQ-5D-5L) and Short Form-36 (SF-36) questionnaires. Clinical, sociodemographic, anthropometric and nutritional data were collected. Associations between HRQoL outcomes and candidate predictors were examined using univariate and multivariable regression. Results: One hundred and eighty-three participants were analysed (median age 61 years; 64 % female). Median EQ-5D-5L utility and EQ-VAS scores were 0.49 (IQR 0.22–0.67) and 50 (40–70), respectively. SF-36 scores were markedly impaired across all domains, with lowest medians for physical functioning, role limitations, energy/fatigue and general health (0–30). In multivariable models, higher phase angle independently predicted better role limitations due to physical health (β 13.93, 95 % CI 1.13–26.72; p = 0.035; R2 = 0.53). Greater handgrip strength was associated with higher energy/fatigue scores (β 0.62, 95 % CI 0.18–1.06; p = 0.007; R2 = 0.25). Employment was strongly associated with emotional wellbeing (employed vs unemployed; β 19.19, 95 % CI 9.13–29.26; p < 0.001; R2 = 0.21) and general health (β 20.49, 95 % CI 10.66–30.32; p < 0.001; R2 = 0.14). Higher oral dietary energy intake was associated with better social functioning (β 0.02, 95 % CI 0.01–0.03; p < 0.001). Underlying diagnosis, small bowel length and HPN macronutrient composition showed no consistent relationships. Conclusion: Adults receiving long-term HPN experience profound impairment in HRQoL, comparable with other high-burden chronic diseases. Variation in QoL was more strongly related to employment, education, muscle strength, oral intake and treatment burden than to diagnosis or HPN composition, highlighting modifiable targets for multidisciplinary care.
Author(s): Kirk C, Pearce MS, Jones DE, Thompson NP, Mooney PD, Dibb M, Mathers JC
Publication type: Article
Publication status: Published
Journal: Clinical Nutrition ESPEN
Year: 2026
Volume: 73
Print publication date: 01/06/2026
Online publication date: 10/03/2026
Acceptance date: 27/02/2026
Date deposited: 14/04/2026
ISSN (electronic): 2405-4577
Publisher: Elsevier Ltd
URL: https://doi.org/10.1016/j.clnesp.2026.103104
DOI: 10.1016/j.clnesp.2026.103104
PubMed id: 41819424
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