For children who were born preterm, there is usually close follow-up and frequent assessment by healthcare professionals. Much of this follow-up and assessment is focused on neurodevelopmental impairment (NDI).
A group of Canadian researchers, led by Lindsay Richter, MSc, at the University of British Columbia, noted that NDI measures were developed by researchers and clinicians, without the input of parents. They thus asked more than 1300 parents of 18-21-month-old children who had all been born before 29 weeks gestational age about their perception of how their child’s development was progressing. The resulting article, entitled “Parental and Medical Classification of Neurodevelopment in Children Born Preterm,” is being early released this week in Pediatrics (10.1542/peds.2024-066148).
Immediately before the child underwent a formal developmental assessment, the parent was asked to rate their child’s development in one of 4 categories:
- “My child is progressing normally.”
- “My child has a mild developmental impairment.”
- “My child has a moderate developmental impairment.”
- “My child has a severe developmental impairment.”
The authors found that:
- The parents’ perception of the child’s development was consistent with the formal assessment only 59% of the time.
- For 31% of the children, the parents’ assessment was more positive than the formal assessment.
- For the 185 children who were formally assessed as having severe NDI, 56% of parents rated their child as having mild or moderate developmental impairment, and nearly one-third of parents rated their child as “progressing normally.” Only 12% of these parents perceived that their child had a severe developmental impairment.
- Parents were more likely to classify their child as having any developmental impairment when the formal assessment classified the child as having no impairment when the child required technology, such as supplemental oxygen or tube feedings, in the home, or if the child had been referred to a physical, occupational, or speech therapist, psychologist, or rehabilitation program.
There are thoughtful discussions speculating about reasons why there is this discordance in assessment of the child’s capabilities, both in this article and in an accompanying commentary by Dr. Sarah Sobotka from the University of Chicago and Dr. Lainie Friedman Ross from the University of Rochester (10.1542/peds.2024-068432), and I would encourage you to read both.
The authors of both the article and the commentary urge us to include the perspectives of those with the lived experience of being a caregiver for a child when developing formal assessments that may inaccurately label that child. On a daily basis, we also need to listen to these caregivers when we see the patient in the inpatient or outpatient setting. They can tell us about strengths and resiliencies that may not come across in a formal assessment, and this input can lead to a more holistic perspective and recommendations for management that may be more helpful and successful.