TY - JOUR
T1 - Measuring quality standards in chronic intestinal failure
T2 - A pilot international survey
AU - Kopczynska, Maja
AU - Schneider, Stéphane
AU - Arvanitaki, Marianna
AU - Burch, Nicola
AU - De Schepper, Heiko
AU - Fayemendy, Philippe
AU - Fonseca, Jorge
AU - Jeppesen, Palle Bekker
AU - Joly, Francisca
AU - Marinho, Aníbal
AU - Quayle, Jessica
AU - Rasmussen, Julie
AU - Vanuytsel, Tim
AU - Vinter-Jensen, Lars
AU - Wesseling, Joost
AU - Pironi, Loris
AU - Lal, Simon
N1 - Copyright © 2025 European Society for Clinical Nutrition and Metabolism. Published by Elsevier Ltd. All rights reserved.
PY - 2025/12
Y1 - 2025/12
N2 - Background & aims It is recognised that the approach to chronic intestinal failure (CIF) care delivery can differ both within and between countries. The aim of this pilot study was to explore the utility and fulfilment of the European Society for Clinical Nutrition and Metabolism-endorsed quality-of-care standards across European CIF centres. Methods To evaluate differential approaches to quality-of-care delivery, lead clinicians of small (<30 current patients), medium (30–100 patients) and large (>100 patients) CIF centres from five countries were asked to complete a 139-item questionnaire. As per the standards, the questionnaire was divided into four subsections: background information concerning the CIF centre, structure and process of care and CIF outcome monitoring. Results The response rate was 100 % from 15 CIF centres across five countries: 20 % responses from Belgium, 26.7 % from Denmark, 20 % from France, 20 % from United Kingdom and 13.3 % from Portugal. Despite an extensive number of questions, the questionnaire was completed without any missing data, while also allowing for further comments that elaborate on centre experience. The gaps identified included (1) providing two specialist clinicians with expertise in IF restricting cross-cover arrangements; (2) access to psychology and psychiatry services; (3) access to specific ward area; (4) establishment of networks with other services; (5) patient engagement; (6) CIF outcome monitoring. Conclusion This pilot study clearly demonstrated the utility and fulfilment of the quality-of-care standards in selected European CIF centres. Future work will include expansion of participating centres, as well as annual reassessment of quality-of-care standards per centre.
AB - Background & aims It is recognised that the approach to chronic intestinal failure (CIF) care delivery can differ both within and between countries. The aim of this pilot study was to explore the utility and fulfilment of the European Society for Clinical Nutrition and Metabolism-endorsed quality-of-care standards across European CIF centres. Methods To evaluate differential approaches to quality-of-care delivery, lead clinicians of small (<30 current patients), medium (30–100 patients) and large (>100 patients) CIF centres from five countries were asked to complete a 139-item questionnaire. As per the standards, the questionnaire was divided into four subsections: background information concerning the CIF centre, structure and process of care and CIF outcome monitoring. Results The response rate was 100 % from 15 CIF centres across five countries: 20 % responses from Belgium, 26.7 % from Denmark, 20 % from France, 20 % from United Kingdom and 13.3 % from Portugal. Despite an extensive number of questions, the questionnaire was completed without any missing data, while also allowing for further comments that elaborate on centre experience. The gaps identified included (1) providing two specialist clinicians with expertise in IF restricting cross-cover arrangements; (2) access to psychology and psychiatry services; (3) access to specific ward area; (4) establishment of networks with other services; (5) patient engagement; (6) CIF outcome monitoring. Conclusion This pilot study clearly demonstrated the utility and fulfilment of the quality-of-care standards in selected European CIF centres. Future work will include expansion of participating centres, as well as annual reassessment of quality-of-care standards per centre.
KW - Intestinal failure
KW - Monitoring
KW - Quality standards
KW - Survey
KW - Quality of Health Care/standards
KW - Pilot Projects
KW - Humans
KW - Intestinal Failure/therapy
KW - Europe
KW - Surveys and Questionnaires
KW - Chronic Disease
UR - https://www.scopus.com/pages/publications/105021134313
U2 - 10.1016/j.clnesp.2025.10.035
DO - 10.1016/j.clnesp.2025.10.035
M3 - Article
C2 - 41202877
AN - SCOPUS:105021134313
SN - 2405-4577
VL - 70
SP - 509
EP - 515
JO - Clinical Nutrition ESPEN
JF - Clinical Nutrition ESPEN
ER -