How to measure patient and family important outcomes in extremely preterm infants: A scoping review

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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
19:15

Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale

Published on: August 25, 2014

85.9K

Anne Synnes1, Mei Mei Lam2, M Florencia Ricci3

  • 1Department of Pediatrics, BC Women's Hospital and BC Children's Hospital Research Institute, University of British Columbia, Vancouver, British Columbia, Canada.

Acta Paediatrica (Oslo, Norway : 1992)
|April 5, 2024
PubMed

Insights

This study identified valid, parent-friendly tools to measure key outcomes in preterm children at 18-24 months, including child well-being and caregiver mental health, aiding future research.

Area of Science:

  • Neonatal research
  • Pediatric outcomes assessment
  • Child development

Background:

  • Parents of preterm infants identified seven key outcome domains for assessment at 18-24 months: child well-being, quality of life/function, socio-emotional/behavioral outcomes, respiratory, feeding, sleeping, and caregiver mental health.
  • Standardized measurement of these outcomes is crucial for audit and research in this vulnerable population.

Purpose of the Study:

  • To identify the most suitable and validated tools for measuring parent-identified outcomes in children born preterm at 18-24 months of age.
  • To establish a consensus on preferred measurement tools for use in clinical audits and research.

Main Methods:

  • Seven working groups conducted literature reviews to identify potential measurement tools for the seven outcome domains.
  • Expert and parent consensus was achieved through workshops and questionnaires, requiring 80% agreement on preferred tools.

Main Results:

  • Consensus was reached on seven brief, cost-effective, and parent-friendly validated measures available in English or French.
  • These selected tools are suitable for inclusion in a minimum dataset and as alternative measures for funded research.

Conclusions:

  • Validated questionnaires and tools are available to measure parent-identified outcomes in young preterm children.
  • This study facilitates future research and data collection on outcomes critical to families of preterm infants.
Abstract

Keywords:
health‐related quality of lifeneonatal prematurityoutcome measurespatient‐centred outcomes research

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