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Article Dans Une Revue Clinical Nutrition ESPEN Année : 2024

Patients’ and caregivers’ perspective on challenges and outcomes with tube feeding: Analysis of home enteral nutrition survey data

Osman Mohamed Elfadil
Ankitaben Patel
  • Fonction : Auteur
Simon Lal
  • Fonction : Auteur
Frederico Bozzetti
Cristina Cuerda
  • Fonction : Auteur
Palle Jeppesen
  • Fonction : Auteur
Andre van Gossum
  • Fonction : Auteur
Geert Wanten
  • Fonction : Auteur
Kinga Szczepanek
  • Fonction : Auteur
Georg Lamprecht
  • Fonction : Auteur
Tim Vanuytsel
  • Fonction : Auteur
Loris Pironi
Ryan Hurt
  • Fonction : Auteur
Manpreet Mundi

Résumé

Background Given the growing use of home enteral nutrition (HEN), assessing the experience of consumers and caregivers is crucial to understanding the real-world subjective and objective challenges of administering HEN. Methods After obtaining institutional review board approval, a survey was distributed to HEN consumers and caregivers between January 16, 2020, and July 16, 2021. Data collected included information regarding demographics, primary diagnosis, tube and connectors, HEN regimen, and overall HEN experience. Results A total of 884 individuals responded to the survey: 673 (76.1%) responses by caregivers and 211 (23.9%) responses by patients. The study cohort included 566 (64%) children and 318 (36%) adults. The leading primary diagnosis of participants was developmental delay and motility disorder for children and adults, respectively. Low-profile gastric tubes were the most used (75.7% of children and 30.3% of adults). Notably, legacy connectors were utilized for more patients (46.7% children, 52.6% adults) compared to ISO-80369-3 connectors (38.9% children, 29.7% adults). HEN complications were prevalent, including enteral tube site infections and other tube-related complications, including clogging and kinking. Conclusion This real-world data reveals that HEN complications remain prevalent. Additionally, despite introducing ISO-80369-3 connectors many years ago, most patients continue to use legacy tubes with a significant lack of knowledge about ISO-80369-3 connectors. The survey results guide HEN providers to focus on several areas to reduce complications.
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Dates et versions

hal-04595569 , version 1 (31-05-2024)

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Osman Mohamed Elfadil, Ankitaben Patel, Francisca Joly, Simon Lal, Frederico Bozzetti, et al.. Patients’ and caregivers’ perspective on challenges and outcomes with tube feeding: Analysis of home enteral nutrition survey data. Clinical Nutrition ESPEN, 2024, 61, pp.94-100. ⟨10.1016/j.clnesp.2024.03.005⟩. ⟨hal-04595569⟩

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