This excellent post sums up much of what I’ve been hoping for in antenatal counseling. When they tell you “moderate to severe neurodevelopmental impairment” and “severe to profound neurodevelopmental impairment,” it sounds like “life without parole” for you, the parent, when “delayed” would be the better way of looking at it. Our son is delayed, and we might wait an extra year on kindergarten, but this isn’t as bad as it sounds in the terms they give you when they’re counseling you on whether you should intubate your child.
Death or ‘neurodevelopmental impairment’ (NDI) as a combined outcome has become a sort of de facto standard as the primary outcome for neonatal clinical trials. Because many very preterm infants have developmental delay, intellectual and learning difficulties, and some have neurological problems, it is considered valuable to know if an intervention affects those things. Increasing survival is a good thing to do, reducing long term problems is also a good goal. Obviously, if you die, you can’t have developmental delay, so these are “competing” outcomes, and there is a certain sense to combining them. The idea being that the primary outcome of a trial or of a cohort study, should be to examine “intact” survival.
In order for the follow up to be of a reasonable length and to keep follow-up rates high, the duration of the follow-up can’t be too long. Which is why we end up using tools…
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