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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Standardized Outcome Measures for Preterm and Hospitalized Neonates: An ICHOM Standard Set
Esther Schouten1, Johanna Haupt2, Jessily Ramirez3
1Divison of Neonatology, LMU University Children's Hospital, Dr. V. Hauner, Munich, Germany.
Insights
A new set of 21 core outcomes and 14 assessment tools for neonatal care has been developed. This standardized approach enables global comparison of infant outcomes and supports tailored interventions for high-risk newborns.
Area of Science:
- Neonatal health outcomes research
- Global health surveillance
Background:
- Approximately 10% of infants require hospitalization at birth, facing long-term developmental challenges.
- Current follow-up tools are often inaccessible or unaffordable, particularly in low- and middle-income countries.
- Early detection of developmental delay is crucial for providing timely support to vulnerable infants.
Purpose of the Study:
- To develop a standardized, globally relevant set of core outcomes for neonatal care.
- To identify feasible tools for evaluating and following up on neonatal outcomes.
- To improve quality of care, shared decision-making, and global benchmarking in neonatology.
Main Methods:
- An international working group, including healthcare professionals and patient representatives, was convened by the International Consortium for Health Outcomes Measurement (ICHOM).
- A modified Delphi process involving three rounds was used to develop the outcome set.
- Patient and healthcare professional surveys were conducted for validation.
Main Results:
- A literature review identified 1,076 articles and 26 registries for outcome screening.
- A neonatal set comprising 21 core outcomes across physical, social, and mental functioning domains was established.
- Fourteen assessment tools were identified for evaluating these outcomes at three distinct timepoints.
Conclusions:
- The developed outcome set is designed for global implementation, facilitating cross-national outcome comparisons.
- The consensus-driven, stakeholder-involved development process ensures the set's worldwide applicability and relevance.
- This initiative aims to standardize neonatal care evaluation and improve long-term outcomes for infants.
Introduction:
Approximately, one in ten infants is born preterm or requires hospitalization at birth. These complications at birth have long-term consequences that can extend into childhood and adulthood. Timely detection of developmental delay through surveillance could enable tailored support for these babies and their families. However, the possibilities for follow-up are limited, especially in middle- and low-income countries, and the tools to do so are either not available or too expensive. A standardized and core set of outcomes for neonates, with feasible tools for evaluation and follow-up, could result in improving quality, enhance shared decision-making, and enable global benchmarking.
Methods:
The International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group, which was comprised of 14 health-care professionals (HCP) and 6 patient representatives in the field of neonatal care. An outcome set was developed using a three-round modified Delphi process, and it was endorsed through a patient representative-validation survey and an HCP survey.
Results:
A literature review revealed 1,076 articles and 26 registries which were screened for meaningful outcomes, patient-reported outcome measures, clinical measures, and case mix variables. This resulted in a neonatal set with 21 core outcomes covering three domains (physical, social, and mental functioning) and 14 tools to assess these outcomes at three timepoints.
Discussion:
This set can be implemented globally and it will allow comparison of outcomes across different settings and countries. The transparent consensus-driven development process which involved stakeholders and professionals from all over the world ensures global relevance.
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