Objective

Various national and international guidelines for the management of thyroid cancer exist. The aim of this survey was to evaluate whether patients experience differences regarding the management of thyroid cancer in Germany and in France.

Methods

An online survey addressing diagnosis, treatment, aftercare, and information needs of thyroid cancer survivors was set up by the German and the French nationwide thyroid cancer self-help organizations. The survey consisted of up to 70 questions depending on the given answers. Descriptive statistics and univariate comparisons, if appropriate, for comparing thyroid cancer survivors in Germany and France were performed.

Results

In total, 1254 thyroid cancer survivors took part in the survey, of whom 1005 were included in the analysis, 618 from Germany and 387 from France. Remarkable differences between the two countries were observed regarding waiting times, diagnostics, surgical complications, radioiodine treatment, and aftercare of the patients. A high disease burden and lack of information regarding the condition and its treatment were reported in both countries.

Conclusion

This large survey showed that despite various guidelines for the management of thyroid cancer, thyroid cancer survivors’ experiences are noticeably different between two big European countries. Lack of information and unmet needs are still tasks to be addressed in order to optimize thyroid cancer care.

中文翻译：

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甲状腺癌的管理：来自德国和法国患者调查的结果

客观的

存在各种针对甲状腺癌管理的国家和国际指南。本次调查的目的是评估德国和法国患者在甲状腺癌管理方面是否存在差异。

方法

德国和法国全国性甲状腺癌自助组织开展了一项针对甲状腺癌幸存者的诊断、治疗、善后和信息需求的在线调查。根据给出的答案，调查最多包含 70 个问题。进行了描述性统计和单变量比较，如果合适，用于比较德国和法国的甲状腺癌幸存者。

结果

共有 1254 名甲状腺癌幸存者参与了调查，其中 1005 人被纳入分析，618 人来自德国，387 人来自法国。两国在等待时间、诊断、手术并发症、放射性碘治疗和患者善后护理方面存在显着差异。两国都报告了高疾病负担和缺乏有关疾病及其治疗的信息。

结论

这项大型调查显示，尽管甲状腺癌治疗指南各不相同，但两个欧洲大国之间甲状腺癌幸存者的经历却明显不同。为了优化甲状腺癌护理，信息缺乏和未满足的需求仍然是需要解决的任务。