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Section IV
Consequences of Preterm Birth

RECOMMENDATIONS


Recommendation IV-1: Develop guidelines for the reporting of infant outcomes. The National Institutes of Health, the U.S. Department of Education, other funding agencies, and investigators should develop guidelines for determining and reporting outcomes for infants born preterm that better reflect their health, neurodevelop-mental, educational, social, and emotional outcomes across the life span and conduct research to determine methods that can be used to optimize these outcomes.


Specifically,


  • Outcomes should be reported by gestational age categories, in addition to birth weight categories; and better methods of measuring fetal and infant maturity should be devised.

  • Obstetrics-perinatology departments and pediatrics-neonatology departments should work together to establish guidelines to achieve a more uniform approach to evaluating and reporting outcomes, including ages of evaluation, measurement tools, and the minimum duration of follow-up. The measurement tools should cover a broad range of outcomes and should include quality of life and the elicitation of outcome preferences from adolescents and adults born preterm and their families.

  • Long-term outcome studies should be conducted into adolescence



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OCR for page 430
Preterm Birth: Causes, Consequences, and Prevention Section IV Consequences of Preterm Birth RECOMMENDATIONS Recommendation IV-1: Develop guidelines for the reporting of infant outcomes. The National Institutes of Health, the U.S. Department of Education, other funding agencies, and investigators should develop guidelines for determining and reporting outcomes for infants born preterm that better reflect their health, neurodevelop-mental, educational, social, and emotional outcomes across the life span and conduct research to determine methods that can be used to optimize these outcomes. Specifically, Outcomes should be reported by gestational age categories, in addition to birth weight categories; and better methods of measuring fetal and infant maturity should be devised. Obstetrics-perinatology departments and pediatrics-neonatology departments should work together to establish guidelines to achieve a more uniform approach to evaluating and reporting outcomes, including ages of evaluation, measurement tools, and the minimum duration of follow-up. The measurement tools should cover a broad range of outcomes and should include quality of life and the elicitation of outcome preferences from adolescents and adults born preterm and their families. Long-term outcome studies should be conducted into adolescence

OCR for page 430
Preterm Birth: Causes, Consequences, and Prevention and adulthood to determine the extent of recovery, if any, and to monitor individuals who were born preterm for the onset of disease during adulthood as a result of being born preterm. Research should identify better neonatal predictors of neurodevelopmental disabilities, functional outcomes, and other long-term outcomes. These will allow improved counseling of the parents, enhance the safety of trials of interventions for mothers and their infants by providing more immediate feedback on infant development, and facilitate planning for the use of comprehensive follow-up and early intervention services. Follow-up and outcome evaluations for infants involved in maternal trials of prenatal means of prevention or treatment of threatened preterm delivery and infant trials of means of prevention and treatment of organ injury not only should report the infant’s gestational age at delivery and any neonatal morbidity but also should include neurological and cognitive outcomes. Specific outcomes should be tailored to answer the study questions. Research should identify and evaluate the efficacies of postnatal interventions that improve outcomes. Recommendation IV-2: Investigate the economic consequences of preterm birth. Researchers should investigate the gaps in understanding of the economic consequences of preterm birth to establish the foundation for accurate economic evaluation of the relative value of policies directed at prevention and guidelines for treatment. This research should assess the long-term educational, social, productivity, and medical costs associated with preterm birth, as well as the distributions of such costs; undertake multivariate modeling to refine the understanding of what drives the large variance of the economic burden, even by gestational age at birth; be ongoing to provide the basis for ongoing assessments; and establish the basis for refined economic assessment of policies and interventions that would reduce the economic burden.

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