When we counsel families about the potential outcomes for infants born profoundly preterm, I think we would all agree that we should be honest, transparent and truthful. Which includes, I would suggest, truthfulness about our own local results, as well as what is possibly available elsewhere.
In order to communicate such results we need to have a good idea of what those results are. I think it is entirely acceptable to say, for example “we don’t have much experience with babies of 22 weeks gestation, they don’t come along very often, and until recently we didn’t think that active care of such infants was a good idea. We have changed our approach and will do the best we can for your baby, whatever we choose together for her”. The rest of the conversation should follow the parents leads, while trying to determine what is important for them.
All of that, of course, requires that you have some idea about the likelihood of survival and of long term functional outcomes. Unfortunately many professionals in the chain of decision making are not well informed themselves. In a recent blog post I discussed an article which asked health professionals in the UK involved in neonatology to estimate survival and severe disability among survivors, and found major variability in estimates, generally estimates of survival were lower than a published calculator, and estimates of “severe disability” were higher.
Another article addressing similar estimates among health care workers who might be asked to talk to mothers with threatened profoundly preterm has been published from the state of Victoria in Australia. Boland RA, et al. Disparities between perceived and true outcomes of infants born at 23-25 weeks’ gestation. Aust N Z J Obstet Gynaecol. 2021. Obstetricians, neonatologists, midwives and nurses in tertiary and non-tertiary hospitals were questioned.
Estimates of the respondents were compared to recent actual local data, including outborn babies. Overall, as in several previous studies, survival was underestimated, and “major disability” was dramatically over-estimated.
As this study again shows, the majority of survivors at every gestational age do not have major disability, whereas respondents think that the proportions are reversed. Obstetricians and nurses tended to be more pessimistic than neonatologists, another typical finding.
The authors compared their results to a survey from 2010, and found that respondents were more pessimistic than they were previously, when comparing estimates to contemporary results. Survival is improving, but it seems likely that mothers are receiving inaccurate, unnecessarily pessimistic information.