Abstract：
Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System®-29 (PROMIS®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.
摘要：
目的：尽管生存有所改善，青少年和年轻成人(AYA)肿瘤患者的健康相关生活质量(HRQOL)结局为阴性.AYA癌症计划试图开发评估工具以确定需要的领域。我们旨在在AYA肿瘤学计划诊所中证明患者报告结果测量信息系统®-29（PROMIS®-29）的可行性/实用性。方法：AYA患者由肿瘤学家转诊至PrismaHealth的AYA肿瘤学项目。PROMIS-29v2.0调查是在护理点向AYAs进行的。确定了调查分布和完成率的可行性。PROMIS调查是自我报告的，随后使用标准化方法进行评分。评估的领域包括身体功能，焦虑,抑郁症,疲劳,睡眠障碍,参与社会角色/活动的能力，疼痛干扰，和疼痛强度。还提供了基于患者级别和程序级别的调查响应的AYA护理交付的定性描述。结果：在2017年5月至2019年期间，134名新诊断或正在接受治疗的AYAs完成了调查。PROMIS-29的分配和完成率均为100％，由于PROMIS-29评分模式，项目级别的服务实现了有意义的变化。在整个队列中，焦虑的T分数，疲劳,和身体功能达到临床相关阈值。结论：PROMIS为AYA计划提供了可行的机会，以测量AYAs中临床有用的HRQOL结果。该调查可用于为最近诊断和治疗中的AYAs提供实时AYA护理，并在AYA肿瘤学计划中进行程序更改。
