Departments of Family Medicine and Community and Preventive Medicine, University of Rochester School of Medicine and Dentistry, Rochester, NY, USA.
Cancer. 2011 Aug;117(15 Suppl):3603-17. doi: 10.1002/cncr.26260.
Patient-reported outcomes (PROs) are measures completed by patients to capture outcomes that are meaningful and valued by patients. To help standardize PRO measures in patient navigation research and program evaluation, the Patient-Reported Outcomes Working Group (PROWG) was convened as part of the American Cancer Society's National Patient Navigator Leadership Summit.
The PROWG consisted of clinicians, researchers, and program managers from a variety of perspectives who developed a set of recommended PRO measures across the cancer continuum (ie, screening, diagnostic follow-up, treatment, survivorship, end of life) as well as those useful for assessing family caregivers. Measures were recommended based on face validity, responsiveness to navigation, reliability, and construct validity in relevant populations. Other considerations included readability, existence of multiple language versions, the existence of norm groups, and respondent burden.
The PROWG reached consensus on measures for use in the domains of treatment adherence; perceived barriers to care; satisfaction with cancer care; satisfaction with patient navigation services; working alliance with patient navigator; perceived knowledge/competence/self-efficacy; functional assessment/symptom burden; global quality of life; specific quality-of-life symptoms (eg, depression, anxiety); and perceived cultural competency of the navigator. In domains where validated measures were found lacking, recommendations were made for areas of needed scale development.
These measures should guide research and programmatic evaluation of patient navigation.
患者报告的结局（PROs）是患者完成的测量，以捕捉对患者有意义和有价值的结局。为了帮助标准化患者导航研究和计划评估中的 PRO 测量，患者报告结局工作组（PROWG）作为美国癌症协会国家患者导航员领导力峰会的一部分而成立。
PROWG 由来自不同视角的临床医生、研究人员和项目管理人员组成，他们在癌症连续体（即筛查、诊断随访、治疗、生存、生命末期）中开发了一系列推荐的 PRO 测量，以及那些用于评估家庭照顾者的有用的测量。根据外观有效性、对导航的响应性、可靠性和相关人群中的构念有效性来推荐测量。其他考虑因素包括可读性、存在多种语言版本、存在规范组以及受访者负担。
PROWG 在以下领域的测量方面达成了共识：治疗依从性；护理障碍感知；癌症护理满意度；对患者导航服务的满意度；与患者导航员的工作联盟；感知知识/能力/自我效能；功能评估/症状负担；整体生活质量；特定生活质量症状（例如，抑郁、焦虑）；以及导航员的感知文化能力。在发现缺乏经过验证的测量的领域，建议制定需要开发的量表领域。
这些测量应该指导患者导航的研究和计划评估。
