Development of a core outcome set for Intraventricular Hemorrhage (IVH) in Preterm Infants

Intraventricular Hemorrhage (IVH) in preterm infants poses a significant global public health challenge, especially among extremely low birth weight (ELBW) neonates who are highly vulnerable to this condition. IVH can lead to severe neurological impairments, developmental delays, and even mortality, highlighting the urgent need for timely and effective interventions. Although extensive research has explored IVH management strategies to improve outcomes, inconsistencies in outcome measures across studies impede meaningful comparisons, data aggregation, and meta-analyses, making it difficult to establish optimal care pathways. To address this, a Core Outcome Set (COS) is essential, providing a standardized collection of critical outcomes determined through consensus-building with diverse stakeholders, including clinicians, researchers, patients, and families. Implementing a COS in IVH treatment trials could enhance the consistency and comparability of study results, facilitating robust meta-analyses and accelerating the application of evidence-based treatments in clinical practice.

Contributors

Principal investigator and supervisors: Tao XIONG, West China Second University Hospital, Sichuan University, Sichuan, China

Yi Yang, West China Second University Hospital, Sichuan University, Sichuan, China
Jiaqian Wu, West China Second University Hospital, Sichuan University, Sichuan, China
Haoran Dou, West China Second University Hospital, Sichuan University, Sichuan, China
Yuan Li, West China Second University Hospital, Sichuan University, Sichuan, China
Yingxin Li, West China Second University Hospital, Sichuan University, Sichuan, China
Dengjun Liu, West China Second University Hospital, Sichuan University, Sichuan, China
Jun Tang, West China Second University Hospital, Sichuan University, Sichuan, China

Further Study Information

Current Stage: Ongoing
Date: December 2024 - December 2026
Funding source(s): This work was supported by National Natural Science Foundation of China (82371723),the Science and Technology Bureau of Sichuan Province (24ZDYF0866), and Innovative Research Project from 0 to 1 of Sichuan University (2023SCUH0021).


Health Area

Disease Category: Neonatal care

Disease Name: Intraventricular Hemorrhage (IVH)

Target Population

Age Range: 0 - 2

Sex: Either

Nature of Intervention: Any

Stakeholders Involved

- Clinical experts
- Consumers (caregivers)
- Families
- Methodologists
- Patient/ support group representatives
- Policy makers
- Researchers
- Service providers
- Statisticians

Study Type

- COS for clinical trials or clinical research
- COS for practice

Method(s)

- Consensus meeting
- Delphi process
- Interview
- Systematic review

This study will use a multi-phase approach to develop a core outcome set (COS) for intraventricular hemorrhage (IVH) in preterm infants. The methods include:

1. Systematic Review: Identify and summarize reported outcomes in previous studies related to IVH in preterm infants.
2. Qualitative Research: Conduct interviews or focus groups with key stakeholders, including clinicians, researchers, and parents, to identify additional relevant outcomes.
3. Delphi Survey: Engage a panel of international experts, healthcare professionals, and parents in a modified Delphi process to prioritize and achieve consensus on core outcomes.
4. Consensus Meeting: Hold a final consensus meeting with key stakeholders to finalize the core outcome set.
5. Dissemination: Develop a dissemination strategy to promote adoption of the core outcome set in future research and clinical practice.

The study will adhere to the COMET initiative’s guidelines and include diverse stakeholder representation to ensure relevance and applicability.

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