The diagnostic trends of Gorlin syndrome (GS) in the pediatric population are not well understood. In an international survey conducted by the Gorlin Syndrome Alliance, 118 individuals who were diagnosed with GS when aged 18 years and under provided information about their diagnosis. Oral surgeons and dermatologists were the most commonly reported physicians involved in diagnosis for 48.3% and 28% of cases, respectively. For 50% of children, the diagnosis was made within a year from presenting sign(s), while 27% report over 4 years to receive GS diagnosis. Of individuals who reported >4 years between presenting signs and diagnosis, 81.3% attributed the delay to insufficient medical team knowledge and 65.6% attributed to lack of personal awareness that presenting signs were related to GS, emphasizing the need for patient and physician education of GS for prompt diagnosis.

中文翻译：

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患者和护理人员对儿童期 Gorlin 综合征延迟诊断的看法

儿科人群中 Gorlin 综合征 (GS) 的诊断趋势尚不清楚。在 Gorlin 综合征联盟进行的一项国际调查中，118 名 18 岁及以下被诊断患有 GS 的人提供了有关他们诊断的信息。口腔外科医生和皮肤科医生是参与诊断的最常报告的医生，分别占 48.3% 和 28% 的病例。对于 50% 的儿童，诊断是在出现体征后一年内做出的，而 27% 的儿童报告在 4 年内接受 GS 诊断。在出现症状和诊断之间报告 > 4 年的个体中，81.3% 将延迟归因于医疗团队知识不足，65.6% 归因于缺乏个人意识，即出现症状与 GS 相关，