Purpose of Study Little is known about the disease burden for children and families of children with Basal Cell Carcinoma Nevus Syndrome. Our study focused on bringing this burden to light.
Methods Used Using an internet accessible survey, we asked parents and guardians about the ways in which BCCNS has affected their families. The survey was promoted through the Basal Cell Carcinoma Syndrome Life Support Network to its membership, as well as through social media. Forty-seven parent/guardians responded.
Summary of Results It was found that at least 75% of children were diagnosed with BCCNS by the age of ten or earlier, which suggests that the burden of disease starts much earlier than previously reported. Moreover, at least 19% of parents or guardians reported that their children had 50 or more BCCs by the age of diagnosis. Sixty-percent of patients must see five or more healthcare specialists within one calendar year, and 33% of children must go see a healthcare provider (of any specialty) 8–10 times within one calendar year.
Conclusions It is our hope that these results will help clinicians be aware of the possible diagnosis of BCCNS at earlier ages in these children. An earlier diagnosis could provide the social and medical specialty-specific support services that may prevent the development of psychosocial and other medical consequences that arise from the burden of disease of BCCNS.
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