Important outcomes after extreme prematurity: what do parents think?

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”.

About Keith Barrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Neonatal Research and tagged . Bookmark the permalink.

6 Responses to Important outcomes after extreme prematurity: what do parents think?

  1. Christina Wilson NNP says:

    I am impressed the results measure qualities we rarely address as part of neonatal care such as happiness, personality, and only down close to the bottom is physical health. It would be interesting to see bigger numbers as it appears to have more with moderate needs have more influence on “what the child likes” than either category of severe or no needs, maybe influencing parenting behaviors. Fantastic work recognizing the essential unit of the baby and parents outcomes as an interactive piece of the neonatal care management 🎉

    • Janet Robertson says:

      Perhaps more importantly, questions should be asked of the children who often become disabled adults. After all they are the ones who live with the consequences of the medical decisions made when they were born.

      • Annie janvier says:

        this has already been done extensively by Saroj Saigal: children and adult children report similar subjective quality of life.

  2. Narasimha Rao says:

    This is a fascinating article. I’ve always been interested in knowing what outcomes matter and to whom. As Dr Robertson said, it Would even be even more relevant if we asked the same to ex-preterm children/ adolescents and adults and see what they’ve to say. Also, death is often included in most outcome studies and it somehow doesn’t get a mention here. Maybe as a measure of ill health or so. These are just my reflections

    • anniejanvier says:

      this has already been done extensively by Saroj Saigal: children and adult children report similar subjective quality of life. She wrote a great book with adult stories. They generally do not become disabled adults, and if yes, they fill their life is as good as controls do.

  3. Ed Bell says:

    Dr. Saigal produced an excellent video of interviews with adults who were born extremely preterm. It is available on youtube: The video is based on her book Preemie Voices.

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