Severe Neurodevelopmental Impairment in Neonates Born Preterm: Impact of Varying Definitions in a Canadian Cohort

Haslam, Matthew D.; Lisonkova, Sarka; Creighton, Dianne; Church, Paige; Yang, Junmin; Shah, Prakesh S.; Joseph, K.S.; Synnes, Anne; Harrison, Adele; Ting, Joseph; Cieslak, Zenon; Sherlock, Rebecca; Yee, Wendy; Fajardo, Carlos; Aziz, Khalid; Toye, Jennifer; Kalapesi, Zarin; Daspal, Sibasis; Seshia, Molly; Alvaro, Ruben; Mukerji, Amit; Silva, Orlando da; Nwaesei, Chuks; Lee, Kyong-Soon; Dunn, Michael; Lemyre, Brigitte; Kovács, Lajos; Barrington, Keith J.; Drolet, Christine; Piedboeuf, Bruno; Claveau, Martine; Faucher, Daniel; Bertelle, Valérie; Massé, Édith; Ojah, Cecil; Andrews, Wayne; Deshpandey, Akhil; McMillan, Doug; Afifi, Jehier; Kajetanowicz, Andrzej; Lee, Shoo K.; Pillay, Thevanisha; Sauvé, Reg; Hendson, Leonora; Reichert, Amber; Bodani, Jaya; Sankaran, Koravangattu; Moddemann, Diane; Nwaesei, Chukwuma; Daboval, Thierry; Dow, Kimberly; Lee, David; Ly, Linh; Kelly, Edmond; Helou, Salhab el; Pelausa, Ermelinda; Riley, Sean P.; Lefebvre, Françine; Demers, Charlotte; Bélanger, Sylvie; Canning, Roderick; Monterrosa, Luis; Makary, Hala; Vincer, Michael; Murphy, Phil

doi:10.1016/j.jpeds.2017.12.020

Cited by 37 publications

(38 citation statements)

References 28 publications

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“…A recent significant project, the COIN project, has been developing a list of common outcomes for neonatal research. Many parents have been included in this project, along with other members of the public [23]. Importantly, the steering group for the COIN project includes parents and former NICU patients.…”

Section: Historymentioning

confidence: 99%

Integrating Parents in Neonatal and Pediatric Research

et al. 2019

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Background: Parents and their infants are the beneficiaries of neonatal and pediatric research, but in the past they have been excluded from most stages of research projects. As a result, many projects may fail to produce the most worthwhile information for parents and families. Lately, veteran resource parents and patients have been increasingly integrated in research initiatives. Methods: Benchmarking of neonatal and pediatric research initiatives where resource parents and/or ex neonatal patients have helped to optimize pediatric research. We review ways in which resource parents/patients can be involved in research, with examples and practical ideas of how to proceed. Results: Resource parents/patients can be collaborators in research and be integrated in many steps: prioritizing research projects, designing trials, determining the outcomes of interest, ethics review, developing and improving consent procedures, collection and interpretation of data, participation in data safety monitoring committees, publication of results, and presentation to peer groups. Some of the strategies for integration of stakeholders in clinical research are more complex, may involve risk and require more training than others. Conclusion: We suggest that groups wanting to involve parents in their research endeavors start with simpler tasks that entail less risk and develop teams of resource parents who have differing interests and abilities. Quality control of programs is essential, such as frequently giving and obtaining feedback from resource parents/patients and researchers. In the future, integration of resource parents/patients into every step of clinical research will be essential to ensure that parent and family important outcomes are examined.

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Section: Historymentioning

confidence: 99%

Integrating Parents in Neonatal and Pediatric Research

et al. 2019

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“…As Haslam et al point out, the term "severe" is a value judgment: each clinician and each parent will have a different perspective on what constitutes "severe" impairment for an individual child. 4 Haslam et al reported that socioeconomic factors appear to mediate less severe NDI but not the most severe forms. 4 As the authors indicate, this observation may be attributed predominantly to reduced statistical power.…”

Section: See Related Article P 75mentioning

confidence: 99%

“…However, as Haslam et al from the Canadian Neonatal Follow-up Network describe in this volume of The Journal, NDI has been defined in many different ways. 4 Haslam et al reviewed the literature to identify definitions of severe NDI that are used by neonatal networks and applied these definitions in the Canadian Neonatal Follow-up Network cohort. 4 This is an important and well-executed analysis, performed with a robust database that captured about 90% of all eligible Canadian infants born at 23-28 completed weeks of gestation between 2009 and 2011.…”

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confidence: 99%

“…4 Haslam et al reviewed the literature to identify definitions of severe NDI that are used by neonatal networks and applied these definitions in the Canadian Neonatal Follow-up Network cohort. 4 This is an important and well-executed analysis, performed with a robust database that captured about 90% of all eligible Canadian infants born at 23-28 completed weeks of gestation between 2009 and 2011. Only 3.5% of children were classified with severe NDI when the most stringent definition was applied, whereas 14.9% were diagnosed with severe NDI according to the least stringent definition.…”

mentioning

confidence: 99%

“…Because the definition of severe NDI strongly influenced both NDI rates and associations with potential risk factors, Haslam et al concluded that a standard definition of severe NDI is needed to facilitate between-center comparisons and scientific communication. 4 However, before we presume that standardizing the definition of "severe NDI" across networks would improve benchmarking and cross-population comparisons, several additional issues deserve consideration. They include the lack of consistency in the ascertainment of both numerators and denominators when reporting the incidence of NDI, and the question of whether a composite outcome should be used at all.…”

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confidence: 99%

See 2 more Smart Citations

Comparing Like with Like When Reporting Neurodevelopmental Outcomes after Preterm Birth

DeMauro

Schmidt

2018

The Journal of Pediatrics

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Mortality, In-Hospital Morbidity, Care Practices, and 2-Year Outcomes for Extremely Preterm Infants in the US, 2013-2018

Bell

Hintz

Hansen

et al. 2022

JAMA

258

105

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Key PointsQuestionAmong extremely preterm infants born at US academic medical centers between 2013 and 2018, what were mortality, in-hospital morbidity, and 2-year neurodevelopmental outcomes?FindingsIn this observational study based on a prospective registry of 10 877 infants born at 22-28 weeks’ gestational age in 2013-2018 in 19 US academic medical centers, survival to discharge occurred in 78.3% and was significantly improved compared with a historical rate of 76.0% among infants born in 2008-2012. Among infants born at less than 27 weeks’ gestational age who survived to follow-up assessment at 2 years, 49.9% had been rehospitalized and severe neurodevelopmental impairment occurred in 21.2%.MeaningAmong extremely preterm infants born at US academic medical centers from 2013 to 2018, survival to discharge significantly improved compared with infants born in 2008-2012, but among those born at less than 27 weeks’ gestational age, rehospitalization and neurodevelopmental impairment at 2 years were common.

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Severe Neurodevelopmental Impairment in Neonates Born Preterm: Impact of Varying Definitions in a Canadian Cohort

Cited by 37 publications

References 28 publications

Integrating Parents in Neonatal and Pediatric Research

Integrating Parents in Neonatal and Pediatric Research

Comparing Like with Like When Reporting Neurodevelopmental Outcomes after Preterm Birth

Mortality, In-Hospital Morbidity, Care Practices, and 2-Year Outcomes for Extremely Preterm Infants in the US, 2013-2018

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