Research and Development, Netherlands Comprehensive Cancer Organisation, 3511 DT Utrecht, The Netherlands.
Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1066 CX Amsterdam, The Netherlands.
Curr Oncol. 2022 Jul 29;29(8):5407-5425. doi: 10.3390/curroncol29080428.
Participation of Adolescents and Young Adults with cancer (AYAs: 18-39 years at time of diagnosis) in patient-reported outcome studies is warranted given the limited knowledge of (long-term) physical and psychosocial health outcomes. We examined the representativeness of AYAs participating in the study, to observe the impact of various invitation methods on response rates and reasons for non-participation.
A population-based, cross-sectional cohort study was performed among long-term (5-20 years) AYA cancer survivors. All participants were invited using various methods to fill in a questionnaire on their health outcomes, including enclosing a paper version of the questionnaire, and sending a reminder. Those who did not respond received a postcard in which they were asked to provide a reason for non-participation.
In total, 4.010 AYAs (response 36%) participated. Females, AYAs with a higher socio-economic status (SES), diagnosed more than 10 years ago, diagnosed with a central nervous system tumor, sarcoma, a lymphoid malignancy, stage III, or treated with systemic chemotherapy were more likely to participate. Including a paper questionnaire increased the response rate by 5% and sending a reminder by 13%. AYAs who did not participate were either not interested (47%) or did want to be reminded of their cancer (31%).
Study participation was significantly lower among specific subgroups of AYA cancer survivors. Higher response rates were achieved when a paper questionnaire was included, and reminders were sent. To increase representativeness of future AYA study samples, recruitment strategies could focus on integrating patient-reported outcomes in clinical practice and involving AYA patients to promote participation in research.
鉴于青少年和年轻成人癌症患者（诊断时年龄为 18-39 岁）在长期的身体和心理社会健康结果方面的知识有限，他们参与患者报告结局研究是合理的。我们检查了参与研究的 AYA 的代表性，以观察各种邀请方法对响应率和不参与的原因的影响。
在一项基于人群的青少年癌症幸存者的横断面队列研究中，使用各种方法邀请长期（5-20 年）幸存者参与，包括随附问卷的纸质版和发送提醒。对于未回复的参与者，他们会收到一张明信片，要求他们提供不参与的原因。
共有 4010 名 AYA（回应率为 36%）参与了调查。女性、社会经济地位较高、诊断时间超过 10 年、诊断为中枢神经系统肿瘤、肉瘤、淋巴恶性肿瘤、III 期或接受系统化疗的 AYA 更有可能参与。随附纸质问卷可将响应率提高 5%，发送提醒可提高 13%。未参与的 AYA 要么不感兴趣（47%），要么希望被提醒患有癌症（31%）。
特定亚组的青少年和年轻成人癌症幸存者的研究参与率显著较低。当包含纸质问卷并发送提醒时，可实现更高的响应率。为了提高未来 AYA 研究样本的代表性，招募策略可以集中在将患者报告的结果整合到临床实践中，并让 AYA 患者参与研究以促进参与。
