Priorities for collaborative research using very preterm birth cohorts

Zeitlin, Jennifer; Sentenac, Mariane; Morgan, Andreï S.; Ancel, Pierre Yves; Barros, Henrique; Cuttini, Marina; Draper, Elizabeth S; Johnson, Samantha; Lebeer, Jo; Maier, Rolf F.; Norman, Mikael; Varendi, Heili

doi:10.1136/archdischild-2019-317991

Cited by 26 publications

(36 citation statements)

References 24 publications

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“… 40 The second study identified education and the effect of minor impairments as being top research priorities. 41 Our definition of mild neurodevelopmental disabilities is in line with these recommendations. In comparison with the commonly used definition, this refined definition increased the proportions of children with mild disabilities but, interestingly, to a similar extent (around 5% to 7%) across gestational age groups.…”

Section: Discussionmentioning

confidence: 69%

“…In the first, general gross motor and cognitive abilities as well as sensory impairments were recommended for inclusion in a core outcome set 40. The second study identified education and the effect of minor impairments as being top research priorities 41. Our definition of mild neurodevelopmental disabilities is in line with these recommendations.…”

Section: Discussionmentioning

confidence: 91%

“… 13 Two recent international Delphi surveys have defined themes to be reported in follow-up studies of preterm born children in high income settings. 40 41 In the first, general gross motor and cognitive abilities as well as sensory impairments were recommended for inclusion in a core outcome set. 40 The second study identified education and the effect of minor impairments as being top research priorities.…”

Section: Discussionmentioning

confidence: 99%

“…Reporting outcomes for children born preterm is challenging not only because completeness of reporting is difficult to achieve,39 but also because outcome measures have to be meaningful for both health professionals and policy makers and for children and parents 13. Two recent international Delphi surveys have defined themes to be reported in follow-up studies of preterm born children in high income settings 4041. In the first, general gross motor and cognitive abilities as well as sensory impairments were recommended for inclusion in a core outcome set 40.…”

Section: Discussionmentioning

confidence: 99%

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Neurodevelopmental outcomes at age 5 among children born preterm: EPIPAGE-2 cohort study

Pierrat

Marchand-Martin

Marret

et al. 2021

BMJ

156

146

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Objectives To describe neurodevelopment at age 5 among children born preterm. Design Population based cohort study, EPIPAGE-2. Setting France, 2011. Participants 4441 children aged 5½ born at 24-26, 27-31, and 32-34 weeks Main outcome measures Severe/moderate neurodevelopmental disabilities, defined as severe/moderate cerebral palsy (Gross Motor Function Classification System (GMFCS) ≥2), or unilateral or bilateral blindness or deafness, or full scale intelligence quotient less than minus two standard deviations (Wechsler Preschool and Primary Scale of Intelligence, 4th edition). Mild neurodevelopmental disabilities, defined as mild cerebral palsy (GMFCS-1), or visual disability ≥3.2/10 and <5/10, or hearing loss <40 dB, or full scale intelligence quotient (minus two to minus one standard deviation) or developmental coordination disorders (Movement Assessment Battery for Children, 2nd edition, total score less than or equal to the fifth centile), or behavioural difficulties (strengths and difficulties questionnaire, total score greater than or equal to the 90th centile), school assistance (mainstream class with support or special school), complex developmental interventions, and parents’ concerns about development. The distributions of the scores in contemporary term born children were used as reference. Results are given after multiple imputation as percentages of outcome measures with exact binomial 95% confidence intervals. Results Among 4441 participants, 3083 (69.4%) children were assessed. Rates of severe/moderate neurodevelopmental disabilities were 28% (95% confidence interval 23.4% to 32.2%), 19% (16.8% to 20.7%), and 12% (9.2% to 14.0%) and of mild disabilities were 38.5% (33.7% to 43.4%), 36% (33.4% to 38.1%), and 34% (30.2% to 37.4%) at 24-26, 27-31, and 32-34 weeks, respectively. Assistance at school was used by 27% (22.9% to 31.7%), 14% (12.1% to 15.9%), and 7% (4.4% to 9.0%) of children at 24-26, 27-31, and 32-34 weeks, respectively. About half of the children born at 24-26 weeks (52% (46.4% to 57.3%)) received at least one developmental intervention which decreased to 26% (21.8% to 29.4%) for those born at 32-34 weeks. Behaviour was the concern most commonly reported by parents. Rates of neurodevelopment disabilities increased as gestational age decreased and were higher in families with low socioeconomic status. Conclusions In this large cohort of children born preterm, rates of severe/moderate neurodevelopmental disabilities remained high in each gestational age group. Proportions of children receiving school assistance or complex developmental interventions might have a significant impact on educational and health organisations. Parental concerns about behaviour warrant attention.

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Section: Discussionmentioning

confidence: 69%

Section: Discussionmentioning

confidence: 91%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

Neurodevelopmental outcomes at age 5 among children born preterm: EPIPAGE-2 cohort study

Pierrat

Marchand-Martin

Marret

et al. 2021

BMJ

156

146

View full text Add to dashboard Cite

show abstract

“…Much less is known about parent priorities for preterm birth research across childhood. One recent study has focused on parent and other stakeholder priorities for childhood outcomes (Zeitlin et al, 2020). Through a Delphi process, Zeiltin and colleagues found that themes relating to the socioemotional needs of children and parents were most highly ranked across all stakeholder groups.…”

Section: Introductionmentioning

confidence: 99%

Parent priorities for research and communication concerning childhood outcomes following preterm birth

et al. 2021

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Background: Children born preterm (before 37 weeks of gestation) are at risk for several adverse childhood outcomes. Parent priorities for research into these outcomes, and preferences for receiving information about these risks, have not previously been established. Here we report the results of an online survey designed to understand parent priorities for research and their preferences for receiving information about childhood outcomes. Methods: An online survey was circulated through social media and was completed by 148 parents of preterm children between the ages of 0 and 12 years from around the United Kingdom (UK). Survey questions were in the form of rating scale, multiple choice, ranking or open-ended free text questions. Descriptive analysis was applied to the quantitative data. Illustrative quotes were extracted from the qualitative free text data and a subset of these questions were analysed using framework analysis. Results: Parent priorities for research centre around identification of factors which can protect against or improve adverse cognitive or developmental outcomes. The majority of parents would prefer for communication to begin within the first year of the child’s life. Parents reported a knowledge gap among health visitors, early years educators and schools. Conclusions: In order to align with parent preferences, research should prioritise identification of protective factors and the development of effective interventions to improve outcomes. Training for health visitors and educational professionals could improve the experiences of families and children.

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Teachers' knowledge and approaches to supporting preterm children in the classroom

Elvert

Johnson

Jaekel

2021

Early Human Development

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Priorities for collaborative research using very preterm birth cohorts

Cited by 26 publications

References 24 publications

Neurodevelopmental outcomes at age 5 among children born preterm: EPIPAGE-2 cohort study

Neurodevelopmental outcomes at age 5 among children born preterm: EPIPAGE-2 cohort study

Parent priorities for research and communication concerning childhood outcomes following preterm birth

Teachers' knowledge and approaches to supporting preterm children in the classroom

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