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 th e project's evaluation, a study was conducted of the parents' views an d experiences of screening. Parents of the most recently screened infa nts were contacted: 85 (68% of those contacted) were interviewed. Desp ite intermittent media coverage and written and verbal information bei ng available, parents' overall knowledge of neuroblastoma screening wa s poor. Thirteen percent reported that they did not know the purpose o f the test. Approximately one-third of parents reported initial anxiet y about the test. Where samples were repeated because of unsatisfactor y results, this percentage increased to 41% for a first-repeat sample. Parents were willing lo make considerable effort to provide samples f or screening but worried unnecessarily because the information they we re given was either inadequate or in an inappropriate format (ie, verb al instead of written).