There has been remarkably little study of the response to the question posed in the title: what do parents think is important in the outcomes of the very preterm baby? Physicians have focused on developmental progress, often as measured by developmental screening tests. The group at Sainte Justine (conflict of interest report: the authors are all either friends, or colleagues of mine, or my wife) have been investigating what parents find important, a new publication (Jaworski M, et al. Parental Perspectives Regarding Outcomes of Very Preterm Infants: Toward a Balanced Approach. The Journal of pediatrics. 2018) is from a study where they asked parents about what their concerns were about their baby, and what were the most positive things about their baby.
This is the first Venn diagram I can remember seeing in a medical publication, which makes me think that “modern maths” (as we called it 50 years ago) might not have been a waste of time after all (to be honest I loved maths, and I was rather good at it, unlike latin…). The A diagram is the positive things that parents said, the B diagram shows their concerns. What I find perhaps most interesting in this publication is the lack of correlation between whether or not the baby actually had neurological impairment or developmental delay and the parents opinions/worries.
As you can see from this table, there was really no difference between the parents whose infants were doing well (by our usual medical criteria) and those who had serious issues (by our usual medical criteria) in their concerns or their positive evaluations. There are only 15 (out of 190) with what they call “severe NDI”, and among that small group there were similar responses to the other parents. The parents who were somewhat more likely to be worried about their child’s development were those in the “mild to moderate NDI” category, where 2/3 of the parents voiced this concern compared to about half of the none or severe categories.
I think the next step needs to be to ask a group of parents what they think we should be trying to measure as neonatal outcomes, both acutely and during follow-up. That next step is already being done, of course, one group that has been working on this is the COIN project, which stands for Core Outcomes In Neonatology, based in London (the UK version of London). You can see on their web page that they are developing a list of Core Outcomes, and the first stakeholder group on their list is “the parents of babies needing medical care”.