75 Parental perspective about the health and development of their extremely preterm child
Bibliographic record
Abstract
Abstract Primary Subject area Neonatal-Perinatal Medicine Background Preterm birth outcome studies and clinical follow-up have traditionally focused on neurodevelopment. We previously showed in a selected sample of parents that they also valued other types of outcomes. Objectives This study aimed to validate these findings in a more diverse cohort by examining parental perspectives about the positive and negative aspects of their very preterm child’s health and development in relation to level of neurodevelopment impairment (NDI). Design/Methods Parents of children born < 29 weeks gestational age in 2016-2018 and seen at two Canadian neonatal follow-up clinics were invited to complete an online survey about their level of agreement with statements about their child’s health, development, and well-being. Parental responses in relation to their child’s level of NDI were examined using Kruskal-Wallis and chi-square for trends tests. Results 199 parental responses were obtained for 165 children (65% of eligible children). Of these children, 52%, 27% and 21% had, respectively, no, mild to moderate, and severe NDI. Development was the most common source of concerns (49%), followed by the child’s future (35%), and physical health (35%). Parents of children with severe NDI were more likely to express concerns than those with mild to moderate or no NDI. Parents rated their child’s health relatively high with a median score of 8/10 (range 3-10). Children with no NDI were given higher scores than those with NDI (p = 0.004). Regardless of level of NDI, almost all parents agreed with their child being happy (p = 1.000) and having a positive personality (p = 0.207). Figure 1 shows that parental concerns increased with level of NDI. Conclusion Parents of preterm children have a balanced perspective on their child’s outcome. Integrating their views when developing core sets of important outcomes for neonatal follow-up is critical.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".