By Hallam Hurt, MD, Education Director and Attending Neonatologist in the Neonatal Follow-Up Program
Vignette: A neonatology fellow presented follow-up of a 2-year-old, formerly a 24-week preterm infant, at a recent conference. The toddler was gastrostomy tube (GT) dependent and exhibited developmental delays in all domains. However, he was making progress, including taking steps on his own, signing and clapping, and engaging socially. His family described him as happy. At the end of the presentation, the fellow stated, “So, he is doing well.” An audience member asked incredulously, “What do you mean, he is doing well?”
So, what does “doing well” mean? In journal articles detailing outcomes of preterm and high-risk infants, this youngster would certainly meet the criteria for neurodevelopmental impairment (NDI), defined as having one or more of the following diagnoses: cerebral palsy, cognitive delay, or hearing or visual impairment. On the other hand, he was progressing along his own developmental trajectory in all domains. Similar to growth charts, maintaining a developmental trajectory requires making measurable developmental gains between assessments.
So, are our medical viewpoints the same as parent viewpoints? There is a growing literature to suggest that they frequently differ. We assess outcomes utilizing numbers — e.g., scores on the Bayley Scales of Infant and Toddler Development, Hammersmith Infant Neurological Examination, and Alberta Infant Motor Scale — as well as issues such as ventilator dependence, feeding difficulties, hospitalizations, and ED visits. Parents view the whole child, often with concerns not reflected and insights not captured in neonatal neurodevelopmental impairment (NDI) assessments.
There are burgeoning investigations assessing parent attitudes and their importance in defining outcomes. One such project, The Parents’ Voice Project, from the Division of Neonatology at the Hospital for Sick Children’s in Toronto, evaluated parental perspectives on child outcome in 248 parents of 213 children born at < 29 weeks’ gestation. Children were evaluated at 18 months and 36 months corrected age and again at 5 years and 7 years of age.1
Neurodevelopmental assessments were:
- Bayley Scales of Infant and Toddler Development, 3rd edition
- Neurological evaluation to assess for cerebral palsy and determine level of impairment (Gross Motor Function Classification System {GMFCS})
- Data for visual and auditory impairment abstracted from medical records
From these assessments, a level of NDI was assigned to each child. Parents rated their child’s health on a scale of 1 to 10, with 10 being the highest. Follow-on queries were, “If you could improve any two things about your child’s health and development, what would they be?” Answers were analyzed utilizing descriptive content analysis.
The 213 children at follow-up had a mean gestational age at birth of 26.6 weeks and birth weight of 907g. At the 18-month visit, no NDI was found in 55%, mild to moderate NDI in 25%, and 20% had severe NDI. Parents’ median score for evaluation of child’s health, despite disability, was high — 9/10 — with 10 being the highest score possible.
Specific scores were:
- Children with no NDI – median health score of 9 (8.5-10)
- Children with mild to moderate NDI – median health score of 8 (7-9)
- Children with severe NDI – median health score of 7 (6-9)
When examining those whose parents rated health as 6 or less, four had no NDI, nine had mild to moderate NDI, and 15 had severe NDI.
Regarding the query for improving child’s health and development, 55% of parents identified development (language and communication, behavior and emotional health, motor development and movements, cognitive and learning skills), 25% respiratory health and fragility, and 14% growth and nutrition; 19% felt no improvements were needed (parents of children with no NDI were more likely to report no need for improvements compared with the other two groups).
Looking back at our vignette and given the surprisingly robust parent ratings of health described above, it becomes understandable that the fellow and the parents of the toddler in the presentation could consider the child to be “doing well.” By utilizing only NDI to assess outcome, we may be categorizing children as having good or bad outcomes while overlooking “real life” parental perceptions of their child. Further, we are ignoring outcomes such as social-emotional development, happiness, family adjustment and acceptance.
Last Word: What does “doing well” mean? Children with and without NDI can thrive and bring happiness to their families. As providers, we must look beyond the numbers.
Final Note: It has been a privilege to contribute to the Follow-up Corner over the years. I hope you have enjoyed it half as much as I have. Now it is time for me to bid farewell. All my best to you now and for the future.
1) Parental perspective on important health outcomes of extremely preterm infants. Magdalena Jaworski, Annie Janvier, Claudia Julie Bourque, Thuy-An Mai-Vo, Rebecca Pearce, Anne R Synnes, and Thuy Mai Luu. Arch Dis Child Neonatal Ed. 2022 Sep;107(5):495-500.
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By Hallam Hurt, MD, Education Director and Attending Neonatologist in the Neonatal Follow-Up Program
Vignette: A neonatology fellow presented follow-up of a 2-year-old, formerly a 24-week preterm infant, at a recent conference. The toddler was gastrostomy tube (GT) dependent and exhibited developmental delays in all domains. However, he was making progress, including taking steps on his own, signing and clapping, and engaging socially. His family described him as happy. At the end of the presentation, the fellow stated, “So, he is doing well.” An audience member asked incredulously, “What do you mean, he is doing well?”
So, what does “doing well” mean? In journal articles detailing outcomes of preterm and high-risk infants, this youngster would certainly meet the criteria for neurodevelopmental impairment (NDI), defined as having one or more of the following diagnoses: cerebral palsy, cognitive delay, or hearing or visual impairment. On the other hand, he was progressing along his own developmental trajectory in all domains. Similar to growth charts, maintaining a developmental trajectory requires making measurable developmental gains between assessments.
So, are our medical viewpoints the same as parent viewpoints? There is a growing literature to suggest that they frequently differ. We assess outcomes utilizing numbers — e.g., scores on the Bayley Scales of Infant and Toddler Development, Hammersmith Infant Neurological Examination, and Alberta Infant Motor Scale — as well as issues such as ventilator dependence, feeding difficulties, hospitalizations, and ED visits. Parents view the whole child, often with concerns not reflected and insights not captured in neonatal neurodevelopmental impairment (NDI) assessments.
There are burgeoning investigations assessing parent attitudes and their importance in defining outcomes. One such project, The Parents’ Voice Project, from the Division of Neonatology at the Hospital for Sick Children’s in Toronto, evaluated parental perspectives on child outcome in 248 parents of 213 children born at < 29 weeks’ gestation. Children were evaluated at 18 months and 36 months corrected age and again at 5 years and 7 years of age.1
Neurodevelopmental assessments were:
- Bayley Scales of Infant and Toddler Development, 3rd edition
- Neurological evaluation to assess for cerebral palsy and determine level of impairment (Gross Motor Function Classification System {GMFCS})
- Data for visual and auditory impairment abstracted from medical records
From these assessments, a level of NDI was assigned to each child. Parents rated their child’s health on a scale of 1 to 10, with 10 being the highest. Follow-on queries were, “If you could improve any two things about your child’s health and development, what would they be?” Answers were analyzed utilizing descriptive content analysis.
The 213 children at follow-up had a mean gestational age at birth of 26.6 weeks and birth weight of 907g. At the 18-month visit, no NDI was found in 55%, mild to moderate NDI in 25%, and 20% had severe NDI. Parents’ median score for evaluation of child’s health, despite disability, was high — 9/10 — with 10 being the highest score possible.
Specific scores were:
- Children with no NDI – median health score of 9 (8.5-10)
- Children with mild to moderate NDI – median health score of 8 (7-9)
- Children with severe NDI – median health score of 7 (6-9)
When examining those whose parents rated health as 6 or less, four had no NDI, nine had mild to moderate NDI, and 15 had severe NDI.
Regarding the query for improving child’s health and development, 55% of parents identified development (language and communication, behavior and emotional health, motor development and movements, cognitive and learning skills), 25% respiratory health and fragility, and 14% growth and nutrition; 19% felt no improvements were needed (parents of children with no NDI were more likely to report no need for improvements compared with the other two groups).
Looking back at our vignette and given the surprisingly robust parent ratings of health described above, it becomes understandable that the fellow and the parents of the toddler in the presentation could consider the child to be “doing well.” By utilizing only NDI to assess outcome, we may be categorizing children as having good or bad outcomes while overlooking “real life” parental perceptions of their child. Further, we are ignoring outcomes such as social-emotional development, happiness, family adjustment and acceptance.
Last Word: What does “doing well” mean? Children with and without NDI can thrive and bring happiness to their families. As providers, we must look beyond the numbers.
Final Note: It has been a privilege to contribute to the Follow-up Corner over the years. I hope you have enjoyed it half as much as I have. Now it is time for me to bid farewell. All my best to you now and for the future.
1) Parental perspective on important health outcomes of extremely preterm infants. Magdalena Jaworski, Annie Janvier, Claudia Julie Bourque, Thuy-An Mai-Vo, Rebecca Pearce, Anne R Synnes, and Thuy Mai Luu. Arch Dis Child Neonatal Ed. 2022 Sep;107(5):495-500.
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