Stefan Johansson, MD PhD

Somewhat sad to read about the 12y outcomes of kids born <27w in Sweden: https://doi.org/10.1542/peds.2025-073742
I mean, we have this sense that neonatal care in Sweden is great (and it is good!) but the long-term outcomes are not good enough IMHO. And I guess our data is comparable to other well-resourced contexts.
Where can we improve?!
A shout into the #nicuverse for Help!

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Feb 5 at 8:22amWeb
Show threadGustaf LernfeltFeb 5
@stefanjohansson @keithbarrington @gautham @DrVickyPayne @piatkat @padkaer @brar @sarahkedney @aprendizdeprematuros @nicupodcast Wouldn’t that depend on which long term outcomes you look at? This article seems to focus a lot on Autism and ADHD, which can be troublesome, but may also work well in some adults settings with a good QoL. Are there any specific things you feel are more troublesome? I do think on that we should have something similar to GUCH for extreme preterms though.
Show threadStefan Johansson, MD PhDFeb 5
@Gotped @keithbarrington @gautham @DrVickyPayne @piatkat @padkaer @brar @sarahkedney @aprendizdeprematuros @nicupodcast I think an 8-fold increased risk of mod/sev NDD, and an absolute risk of almost 40% is pretty high.
But you are right, QoL and ”clinical endpoints” are not the same thing!
And yes, a GUCH strategy for preterm born adolesc/adults would indeed be needed in Sweden.
Show threadBrar PieningFeb 5
Although I always try to think beyond national borders, embracing people from other countries while working within our EU, national and local contexts, I very much agree with the GUCH-like strategy. This is relevant not only for neurological outcomes, but also for all known impairments affecting premature infants, including their management in adulthood.
@Gotped @keithbarrington @gautham @DrVickyPayne @piatkat @padkaer @sarahkedney @aprendizdeprematuros @nicupodcast @stefanjohansson
Show threadStefan Johansson, MD PhDFeb 6
@brar @Gotped @keithbarrington @gautham @DrVickyPayne @piatkat @padkaer @sarahkedney @aprendizdeprematuros @nicupodcast An editorial is out today. It does not give my SENSE OF URGENCY, it is more like “more research is needed” (what else!)
But they conclude well, that “If we do not continue to look for evidence of long-term benefit or harm from perinatal and neonatal intensive care, we…will remain ignorant, to the detriment of infants under our care and their families.”
https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2025-074298/206313/Neurodevelopmental-Outcomes-at-School-Age-After
Show threadJesper Padkær PetersenFeb 6

@brar @Gotped @keithbarrington @gautham @DrVickyPayne @piatkat @sarahkedney @aprendizdeprematuros @nicupodcast @stefanjohansson
Very complex issue.

Do we know how much longterm morbidity is preterm birth and how much is due to other risk faktors? And do we know these distributions to be stable over time?
I'd argue no to both.

Rigorous surveillance of long and short term outcomes should be done, but individual prognosis offered only with great care, compassion and reservations.

Show threadGustaf LernfeltFeb 6

@padkaer @brar @keithbarrington @gautham @DrVickyPayne @piatkat @sarahkedney @aprendizdeprematuros @nicupodcast @stefanjohansson This one from Sweden was also recently published addressing QoL, 130 / 201 children born extremely preterm. All weighing <1000 g.

It delivers a somewhat more positive message. Although there is clearly a selection bias.

https://www.jpeds.com/article/S0022-3476(25)00497-4/fulltext