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Screening infants for neuroblastoma: the parents' perspective

Lookup NU author(s): Professor Louise Parker, Mike Cole, Emeritus Professor Alan Craft

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Abstract

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 lo 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).


Publication metadata

Author(s): Bell S, Parker L, Cole M, Craft AW

Publication type: Article

Publication status: Published

Journal: Pediatric Hematology and Oncology

Year: 1994

Volume: 11

Issue: 4

Pages: 433-437

Print publication date: 01/07/1994

ISSN (print): 0888-0018

ISSN (electronic): 1521-0669

URL: http://dx.doi.org/10.3109/08880019409140544

DOI: 10.3109/08880019409140544

PubMed id: 7947017


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