Evaluating health related quality of life in paediatric and adult patients who utilise home enteral tube feeding.

Résumé

BACKGROUND: Home enteral tube feeding (HETF) delivers vital nutritional support for individuals unable to consume food orally. While it sustains life, its impact on users' quality of life (QoL) is significant. Limited research has examined the differential effects of HETF across paediatric and adult patients.METHODS: A cross-sectional survey was conducted among 155 HETF users, including paediatric (n = 85) and adult (n = 70) participants. QoL measures were evaluated across four dimensions: social life, working/school life, psychological well-being, and physical functioning. Group comparisons based on age and sex were analysed using non-parametric tests.RESULTS: Adult users were more likely to limit social activities due to tube feeding compared to paediatric users, while carers of paediatric users reported higher social exclusion. Working/school life support was greater for paediatric participants, with males reporting more workplace support than females. Adult HETF users experienced higher levels of physical discomfort and sleep disruption. Psychological concerns, such as body image and missing food, were more pronounced in females. The results revealed significant gaps in financial support, with 47 % receiving no assistance and many spending over $200 monthly on supplies. Half of the users of HETF were entirely dependent on tube feeding for nutrition. Commonly reported needs included financial support, better supply access, and social acceptance.CONCLUSION: HETF significantly affects QoL, with adult HETF users and females reporting greater challenges in social participation, psychological health, and physical functioning. Age- and sex-specific interventions are needed to enhance support for HETF users.