Screening Infants for Neuroblastoma: The Parents' Perspective in False-Positive Cases

The objective of this study was to ascertain the reactions and experiences of parents whose children were defined as false-positive cases in a research program of screening 6-month-old babies for neuroblastoma. Parents of seven of the eight infants falling into this category participated in the study. Parents of five children described themselves as worried/very worried at the positive result, some contemplating the treatment involved and the possibility that their child could die. Parents waited a maximum of 3 days before the clinical investigations took place. The mother of one child was dissatisfied with the handling of the investigations, reporting a luck of information and little opportunity to discuss questions; she was subsequently more anxious about her child. Parents of two children reported lasting “concern” that they attributed to neuroblastoma screening.