Tumor Screening in Beckwith-Wiedemann Syndrome: Parental Perspectives.

ABSTRACT: Children with Beckwith-Wiedemann Syndrome (BWS) and Isolated Hemihypertrophy (IHH) are at an increased risk for developing tumors. Tumor screening in this population is currently being reassessed by several groups and the effect on patients and patient-families has been argued both as a reason to screen and not to screen. Parental perspectives on this topic have never been systematically addressed for the BWS population. Here, we conducted a parent-based survey to evaluate knowledge and attitudes toward tumor screening in patients affected by BWS/IHH. A total of 261 surveys were completed. Overall, parents reported that screening decreased their worry and did not feel that screening increased worry or created a burden. This effect was observed across various demographic variables and other

SUBMITTER: Duffy KA 

PROVIDER: S-EPMC5986606 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature