A Longitudinal Study of Factors that Impact on the Quality of Life of Intestinal Failure Patients treated with Home Parenteral Nutrition

Abstract

Background: Home parenteral nutrition (HPN) is a lifesaving therapy for patients with intestinal failure, aiming to improve survival and quality of life (QoL). However, patients often experience burdensome symptoms including fatigue, pain, gastrointestinal discomfort, and social isolation. Complications such as intestinal failure-associated liver disease and multi-morbidity further compromise QoL. This project investigated the impact of HPN on QoL and explored the role of nutritional status and liver function. Methods: A multi-phase study was conducted, including a systematic review, national survey of healthcare professionals (HCPs), and a prospective longitudinal cohort study of adults on HPN across three centres. The primary outcome was change in QoL scores over 12 months. Secondary outcomes included the influence of liver function, nutrition, parenteral nutrition (PN) composition, and muscle function on QoL. Results: The systematic review identified limited high-quality evidence to guide nutrient provision in adult HPN. The HCP survey revealed inconsistent use of QoL tools and limited integration of Patient Reported Outcome Measures (PROMs). In the longitudinal study (n = 199 at baseline; n = 145 at follow-up), QoL remained significantly impaired, particularly in physical and functional domains. Sociodemographic factors such as employment and higher education were consistently associated with better outcomes across EQ-5D, SF-36, and HPN QoL scores. Employment was associated with improved general health and EQ-5D VAS (β = 10.8, p = 0.001; β = 12.5, p = 0.005). Handgrip strength was linked to reduced fatigue (β = 1.2, p = 0.004), while skeletal muscle mass predicted improved physical functioning (β = 1.66, p = 0.014). Phase angle was associated with lower immobility scores and higher emotional functioning (β = –9.2, p = 0.100; β = 7.5, p = 0.024). Conclusion: QoL in HPN is shaped by a complex interplay of nutritional, clinical, and psychosocial factors. PROMs should be integrated into routine care to support multidisciplinary, patient-centred service development.