TY - JOUR
T1 - Development of a core outcome set for pediatric chronic intestinal failure
AU - Demirok, Aysenur
AU - Nagelkerke, Sjoerd C. J.
AU - Benninga, Marc A.
AU - Köglmeier, Jutta
AU - Mutanen, Annika
AU - Arnell, Henrik
AU - Felcht, Judith
AU - Guimber, Dominique
AU - Wahlstedt, Christina
AU - Avitzur, Yaron
AU - ERNICA Intestinal Failure Working Group and ESPGHAN Network of Intestinal Failure and Intestinal Transplant in Europe
AU - Lambe, C. cile
AU - Tabbers, Merit M.
N1 - Funding Information: We thank Professor Paula Williamson in reviewing our protocol for this study before going live. Furthermore, we thank all participants for their invested time in scoring all outcomes and ERNICA for supporting this study. Publisher Copyright: © 2022 The Authors. Journal of Parenteral and Enteral Nutrition published by Wiley Periodicals LLC on behalf of American Society for Parenteral and Enteral Nutrition.
PY - 2023/3
Y1 - 2023/3
N2 - Background: In research on pediatric chronic intestinal failure, heterogeneity in reported definitions and outcomes exists. This leads to a risk of reporting bias and impossibility of evidence synthesis. Also, reported outcomes should be relevant to both healthcare providers and patients and their parents. Therefore, the aim of this study is to create a core outcome set (COS) to be used in studies on pediatric chronic intestinal failure. Methods: Candidate outcomes were selected from a recent systematic review. A three-round Delphi study among key stakeholders and a consensus meeting with an expert panel were undertaken to achieve consensus on the COS. Results: Seventy-two stakeholders (79%) completed all three rounds of the Delphi process. Ninety-eight outcomes were assessed, and five new outcomes were added after the first round. Ten outcomes were included in the final COS: weaning from parenteral nutrition, growth, mortality, central line–related infection, central line longevity, sepsis not related to central line infection, central line–related thrombosis, intestinal failure–associated liver disease, (serious) adverse events, and health-related quality of life. Conclusion: This pediatric chronic intestinal failure COS consists of 10 outcomes important for all key stakeholders. Usage of this set in future research should minimize outcome heterogeneity and enhance the value of evidence synthesis. This will lead to better management in this field of rare gastrointestinal conditions.
AB - Background: In research on pediatric chronic intestinal failure, heterogeneity in reported definitions and outcomes exists. This leads to a risk of reporting bias and impossibility of evidence synthesis. Also, reported outcomes should be relevant to both healthcare providers and patients and their parents. Therefore, the aim of this study is to create a core outcome set (COS) to be used in studies on pediatric chronic intestinal failure. Methods: Candidate outcomes were selected from a recent systematic review. A three-round Delphi study among key stakeholders and a consensus meeting with an expert panel were undertaken to achieve consensus on the COS. Results: Seventy-two stakeholders (79%) completed all three rounds of the Delphi process. Ninety-eight outcomes were assessed, and five new outcomes were added after the first round. Ten outcomes were included in the final COS: weaning from parenteral nutrition, growth, mortality, central line–related infection, central line longevity, sepsis not related to central line infection, central line–related thrombosis, intestinal failure–associated liver disease, (serious) adverse events, and health-related quality of life. Conclusion: This pediatric chronic intestinal failure COS consists of 10 outcomes important for all key stakeholders. Usage of this set in future research should minimize outcome heterogeneity and enhance the value of evidence synthesis. This will lead to better management in this field of rare gastrointestinal conditions.
KW - Delphi process
KW - children
KW - core outcome set
KW - intestinal failure
KW - parenteral nutrition
UR - http://www.scopus.com/inward/record.url?scp=85146128518&partnerID=8YFLogxK
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85146128518&origin=inward
UR - https://www.ncbi.nlm.nih.gov/pubmed/36546585
U2 - https://doi.org/10.1002/jpen.2468
DO - https://doi.org/10.1002/jpen.2468
M3 - Article
C2 - 36546585
SN - 0148-6071
VL - 47
SP - 364
EP - 371
JO - Journal of parenteral and enteral nutrition
JF - Journal of parenteral and enteral nutrition
IS - 3
ER -