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Parents support newborn screening despite distress
| Study: | Parents' Experiences of Expanded Newborn Screening Evaluations |
| By: | DeLuca J.M. et al. (4 authors total) |
| In: | Pediatrics |
| Link: | http://dx.doi.org/ 10.1542/peds.2010-3413 |
Evaluate the impact of an abnormal newborn screening result for rare metabolic diseases on parents, specifically those more recently added to US screening panels, and for which the medical implications are less well understood.
A total of 44 English-speaking parents without previous experience of metabolic disease whose apparently healthy babies had received abnormal metabolic screening results were interviewed about their experiences shortly after the screening result, and again after diagnostic confirmation. Of the 30 babies, nine had positive diagnoses, eight had negative diagnoses, and thirteen received ‘equivocal confirmatory results’.
Parents were shocked by abnormal results; most had not understood the screening process nor heard of the metabolic disorder in question, and typically researched it on the internet, being frightened by the information they found. Expert consultation was largely considered helpful, though some found the doctors lacked empathy. Waiting for test results was very stressful; those with positive results reported resignation; those with negative results; joy, and those with ambiguous results, confusion. Nearly all parents believed in the value of newborn screening for babies’ health, however.
The ‘magnitude of parents’ distress while waiting for infants’ confirmatory test results should not be underestimated’ - quicker testing and better support to help parents identify metabolic symptoms in potentially affected babies are needed. Distress was high even though recruitment to the study was biased towards parents with better education and knowledge of science and health.
Though very small, this study highlights the problem of accurately explaining newborn screening to parents, caring appropriately for those who receive abnormal results to minimise distress, and supporting those whose babies’ receive equivocal results. Research on the health impacts of disorders of uncertain clinical significance must be a priority, to see whether the medical benefits of newborn screening do (as hoped) outweigh the disadvantages (see previous news).