Background/Objectives: AYAs face unique psychosocial challenges compared to younger children and older adults. Little published data exists about symptoms of psychological distress in AYAs, particularly in large cohorts over time. This study aimed to (1) explore relationships between distress and variables known to impact mental health, (2) examine distress over time, and (3) consult with a patient and public involvement group (Young Advisory Panel, YAP) to contextualize the results. Methods: Secondary data analyses were conducted from a multicentre longitudinal cohort study, which recruited 830 participants aged 13–24 years newly diagnosed with different cancers. The mean age was 20.1 (SD 3.3) and 45% were female. Bespoke surveys, including a validated measure of psychosocial distress, were administered five times over 3 years following diagnosis. Participatory workshops were conducted with the YAP to gather their impressions of the study results and inform conclusions. Results: At the first time point, higher social support was associated with higher distress scores (β = 0.202,p< 0.001) and AYAs with higher depressive symptoms were more likely to see a mental health professional (p< 0.01). Over time, anxiety symptoms remained stable (p= 0.090); however, depressive symptoms improved (p< 0.001). The YAP highlighted the mixed effects of social support and the under-recognition and undertreatment of distress. Conclusions: This information identifies key targets, such as social support, that can inform the design of personalized screening and intervention tools. It also highlights specific timepoints at which these efforts can be directed to mitigate distress and improve quality of life. Future research should include longer-term follow-up, qualitative explorations of distress along the disease trajectory, and ongoing co-production efforts.
背景/目的：与年幼儿童及年长成人相比，青少年及年轻成人（AYAs）面临独特的心理社会挑战。目前关于AYAs心理困扰症状的公开数据，尤其是长期大样本队列研究数据较为缺乏。本研究旨在：（1）探讨心理困扰与已知影响心理健康变量之间的关系；（2）追踪心理困扰随时间的变化趋势；（3）通过患者与公众参与小组（青年顾问小组，YAP）对研究结果进行情境化解读。方法：本研究对一项多中心纵向队列研究进行二次数据分析，该研究招募了830名13-24岁新确诊各类癌症的患者。平均年龄20.1岁（标准差3.3），女性占45%。在确诊后3年内通过五次定制化调查（包含经验证的心理社会困扰评估工具）收集数据。与YAP开展参与式研讨会，收集其对研究结果的解读并形成结论。结果：首次评估显示，较高社会支持与较高心理困扰评分相关（β=0.202，p<0.001），抑郁症状较重的AYAs更倾向于寻求心理健康专业人员帮助（p<0.01）。纵向分析发现焦虑症状保持稳定（p=0.090），而抑郁症状显著改善（p<0.001）。YAP特别指出社会支持的双重影响，以及心理困扰普遍存在识别不足和治疗不充分的问题。结论：本研究明确了社会支持等关键干预靶点，可为个性化筛查与干预工具的设计提供依据，同时揭示了实施干预以缓解心理困扰、改善生活质量的重要时间节点。未来研究应开展长期随访、疾病轨迹中心理困扰的质性探索，并持续推进协同研究模式。
肿瘤(癌症)患者之家