Neuman Heather B, Kwekkeboom Kristine L, Tevaarwerk Amye J, Phelps Kat, Tucholka Jennifer L, Maxcy Courtney, Breuer Catherine R, Schumacher Jessica R
Department of Surgery, University of Wisconsin, Madison, WI, USA.
Carbone Cancer Center, University of Wisconsin, Madison, WI, USA.
Support Care Cancer. 2024 Dec 9;33(1):9. doi: 10.1007/s00520-024-09022-z.
Incorporating patient-reported outcomes (PROs) into survivorship care may improve the comprehensiveness of follow-up. The objective was to engage stakeholders to develop a PRO assessment of survivors' symptoms and concerns for use during breast cancer follow-up.
We convened patient and oncologist stakeholder advisory groups to develop an initial PRO assessment including survivorship domains of importance, measurement instruments, and clinically significant thresholds, and revise the assessment based on feedback from community focus groups and two rounds of iterative pilot testing with survivors.
Stakeholders identified key domains and measurement instruments, including recurrence symptoms, treatment side effects, adherence, mental health, and sexual health. Ninety-four survivors completed the PRO assessment in the initial pilot test (median age 62 years, median 2 years from diagnosis). Most (89/93) reported questions were easy to understand. The level of missingness was low. The most common threshold-level symptoms/concerns were hot flashes (46%), fatigue (35%), back pain (31%), joint pain (31%), and anxiety (30%). The PRO assessment was revised to clarify symptom causality and desire to discuss with a provider. In a follow-up pilot study with 20 survivors, the most common symptoms were chest/breast discomfort (50%) and anxiety (25%).
We leveraged stakeholder input to develop a comprehensive PRO assessment to use to assess breast cancer survivors' well-being. Our PRO assessment is acceptable to survivors. Future research will focus on the integration of the PRO assessment into clinical care.
将患者报告的结局（PROs）纳入癌症 survivorship 护理可能会提高随访的全面性。目标是让利益相关者参与制定一项针对幸存者症状和担忧的 PRO 评估，以用于乳腺癌随访期间。
我们召集了患者和肿瘤学家利益相关者咨询小组，以制定初步的 PRO 评估，包括重要的 survivorship 领域、测量工具和临床显著阈值，并根据社区焦点小组的反馈以及对幸存者进行的两轮迭代试点测试对评估进行修订。
利益相关者确定了关键领域和测量工具，包括复发症状、治疗副作用、依从性、心理健康和性健康。在初始试点测试中有 94 名幸存者完成了 PRO 评估（中位年龄 62 岁，自诊断起中位时间为 2 年）。大多数（89/93）报告称问题易于理解。缺失率较低。最常见的阈值水平症状/担忧是潮热（46%）、疲劳（35%）背痛（31%）、关节痛（31%）和焦虑（30%）。对 PRO 评估进行了修订，以明确症状因果关系以及与医疗服务提供者讨论的意愿。在对 20 名幸存者进行的后续试点研究中，最常见的症状是胸部/乳房不适（50%）和焦虑（25%）。
我们利用利益相关者的意见制定了一项全面的 PRO 评估，用于评估乳腺癌幸存者的健康状况。我们的 PRO 评估为幸存者所接受。未来的研究将集中于将 PRO 评估整合到临床护理中。
