A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and adolescents with advanced cancer. We adopted a four-phase research plan: (1) to elaborate the Advance QoL questionnaire for youth (8–12 and 13–18 years old) with a team of young research partners; (2) to evaluate the understandability of these versions in a sample of 12 young patients from the target population using cognitive interviews; (3) to assess social validity in the same group using a questionnaire and the content validity index (CVI); and (4) to refine the questionnaires according to these results. Four major themes were identified: (1) issues affecting the understanding of the tool; (2) issues that did not affect the understanding of the tool; (3) modifications to improve the tool; and (4) positive features of the tool. Advance QoL was well received, and feedback was positive. Adjustments were made according to young people’s comments and two self-reported versions are now available. It is essential to measure the key domains of QoL in advanced cancer. Advance QoL self-report versions will help target the specific needs of young people with this condition and their families.

中文翻译：

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儿科晚期癌症的生活质量评估：开发患者报告的结果测量以提高生活质量

最近制定了一项措施来评估患有晚期癌症的年轻人的生活质量 (QoL)，可供父母和专业人士使用 (Advance QoL)。本研究旨在详细阐述患有晚期癌症的儿童和青少年的自我报告版本。我们采取了一个四阶段的研究计划：（1）与年轻的研究伙伴团队一起制定针对青少年（8-12岁和13-18岁）的高级生活质量问卷； (2) 使用认知访谈评估来自目标人群的 12 名年轻患者样本中这些版本的可理解性； （3）利用问卷和内容效度指数（CVI）评估同一群体的社会效度； (4)根据这些结果完善调查问卷。确定了四个主要主题：（1）影响工具理解的问题； (2) 不影响工具理解的问题； (3) 修改改进工具； (4) 该工具的积极特征。 Advance QoL 受到好评，反馈也积极。根据年轻人的意见进行了调整，现在有两个自我报告版本。测量晚期癌症生活质量的关键领域至关重要。高级生活质量自我报告版本将有助于满足患有这种疾病的年轻人及其家人的特定需求。