Screening infants for neuroblastoma: the parents' perspective.

Health visitors collected urine samples from 6-month-old infants in a feasibility study of infant screening for neuroblastoma. As part of the project's evaluation, a study was conducted of the parents' views and experiences of screening. Parents of the most recently screened infants were contacted: 85 (68% of those contacted) were interviewed. Despite intermittent media coverage and written and verbal information being available, parents' overall knowledge of neuroblastoma screening was poor. Thirteen percent reported that they did not know the purpose of the test. Approximately one-third of parents reported initial anxiety about the test. Where samples were repeated because of unsatisfactory results, this percentage increased to 41% for a first-repeat sample. Parents were willing to make considerable effort to provide samples for screening but worried unnecessarily because the information they were given was either inadequate or in an inappropriate format (ie, verbal instead of written).