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Letter
Variation in prognosis given by fetomaternal units in fetuses with neurological abnormalities
  1. Anthony Hart1,
  2. Nicolas Embleton2,
  3. Cara Mooney3,
  4. Mike Bradburn3,
  5. Paul David Griffiths4
  1. 1 Paediatric Neurology, Sheffield Children’s NHS Foundation Trust, Sheffield, UK
  2. 2 Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK
  3. 3 School of Health and Related Research, The University of Sheffield, Sheffield, UK
  4. 4 Academic Radiology, University of Sheffield, Sheffield, UK
  1. Correspondence to Dr Anthony Hart, Paediatric Neurology, Sheffield Children’s NHS Foundation Trust, Sheffield S10 5DD, UK; a.r.hart{at}sheffield.ac.uk

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The ‘MRI to enhance the diagnosis of fetal developmental brain abnormalities in utero’ (MERIDIAN) study showed improved diagnostic accuracy and confidence for detecting fetal neurological abnormalities compared with ultrasound. The additional information provided by in utero MRI altered prognosis in 44% of women, although clinicians reported it changed prognosis in only 24%.1 2 The reasons for this discrepancy are not clear, and the MERIDIAN study did not report whether the neurodevelopmental prognoses given to women varied between clinicians or were accurate.

We contacted one clinician at each of the MERIDIAN fetomaternal units and asked what percentage chance of normal neurodevelopmental outcome they would give pregnant women for five fetal neurological abnormalities (table 1). There was general agreement for isolated mild ventriculomegaly,3 but wider variation for posterior fossa abnormalities, with the suggested chance of normal outcome for one condition ranging from 10% to 90%.

Table 1

Percentage chance of normal outcome given to pregnant woman and their families by a clinician in 14 different fetomaternal units for five abnormalities

Estimating long-term neurodevelopmental outcome based on antenatally detected neurological abnormalities is challenging due to limited high-quality data. Even where data exist, it rarely tells the full story: percentages are blunt tools, and terms like ‘good, moderate or severe’, and ‘low, moderate or high risk’ are subjective. Furthermore, outcome studies can erroneously place children with neurological diagnoses into an abnormal group, for example, a child with mild unilateral cerebral palsy with normal cognition, function, quality of life, independence and participation may be categorised as ‘severely abnormal’ based on the diagnosis of cerebral palsy alone. Previous research has shown families do want to know risk, and best-case and worst-case scenarios to build a picture of what it is like caring for a child with those difficulties. This information helps families assess whether they have the emotional and financial means to provide for the child’s possible needs.4

Our data highlight a number of areas that need further study, including analysis of what variation exists in the risks given to women for specific fetal brain abnormalities, and how well these agree with published evidence. Long-term outcome data into later childhood and adolescence are also essential, especially because outcomes assessed at 2–3 years of age may be poor indicators of later abilities.5 Such outcome measure should use commonly available tools for motor, cognitive and behavioural measures, as well as measures of independence, participation, quality of life and parental quality of life and stress.

References

Footnotes

  • Contributors AH analysed the data and wrote the letter. NE reviewed the data, helped with interpretation and edited the final draft. CM helped collate the data, provide advice on interpretation and reviewed the final draft. MB is a statistician who commented on mathematical and statistical aspects of the letter and reviewed and edited the final draft. PDG had the idea for the study, collated the data, reviewed the analysis and provided advice and edited the final copy of the letter.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.

  • Data sharing statement There is no additional data to report with relation to the questions that were asked of obstetricians in fetal maternal units.

  • Patient consent for publication Not required.