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Published on: December 1, 2012
Development of a core outcome set for pediatric chronic intestinal failure
Aysenur Demirok1, Sjoerd C J Nagelkerke1, Marc A Benninga1
1Pediatric Gastroenterology, Hepatology and Nutrition, Emma Children's Hospital, Amsterdam University Medical Center University of Amsterdam, Amsterdam, the Netherlands.
Insights
Researchers developed a core outcome set (COS) for pediatric chronic intestinal failure. This standardized set of 10 outcomes will improve research consistency and evidence synthesis for better patient care.
Area of Science:
- Pediatric Gastroenterology
- Clinical Trial Methodology
- Rare Gastrointestinal Diseases
Background:
- Heterogeneity in outcome reporting in pediatric chronic intestinal failure research hinders evidence synthesis.
- Current outcome reporting lacks relevance for both healthcare providers and patients/parents.
- Need for standardized outcomes to reduce reporting bias and improve research quality.
Purpose of the Study:
- To establish a consensus-driven core outcome set (COS) for pediatric chronic intestinal failure research.
- To ensure outcomes are relevant and meaningful to all key stakeholders.
- To standardize outcome measurement in clinical studies.
Main Methods:
- Systematic review to identify candidate outcomes.
- Three-round Delphi study involving 72 key stakeholders.
- Consensus meeting with an expert panel to finalize the COS.
Main Results:
- Ten core outcomes were identified and agreed upon.
- Outcomes include weaning from parenteral nutrition, growth, mortality, and infection rates.
- Other key outcomes encompass quality of life and liver disease.
Conclusions:
- The developed COS comprises 10 crucial outcomes for pediatric chronic intestinal failure.
- Implementation of this COS will enhance research consistency and evidence synthesis.
- This standardization will lead to improved management of rare gastrointestinal conditions.
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.
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