Development and Validation of a Measure of Self-Advocacy in Female Cancer Survivo

描述（由申请人提供）：癌症幸存者在接受高质量护理方面面临越来越大的挑战，包括日益复杂的医疗保健系统，癌症从急性疾病到慢性疾病的转变，以及压倒性的副作用和症状。促进患者自我倡导的能力，或“为自己挺身而出”，被医疗保健提供者和倡导组织认可为满足这些日益增长的需求的可能解决方案，尽管很少有研究告知这种做法。在其他患者群体（例如艾滋病毒/艾滋病和残疾人）中，对自我宣传进行了深入研究，发现这是一个可改变的因素，能够改善患者的结果，包括减少症状困扰和减少医疗保健利用。这类研究还没有在癌症幸存者，尤其是女性幸存者身上得到充分的复制。症状管理是衡量自我倡导的理想环境，因为它是癌症生存的一个方面，需要患者在生存的多个阶段积极参与选择和实施策略。此外，症状管理中的性别差异对女性幸存者提出了独特的要求，因为在发现和治疗女性症状方面存在患者和提供者层面的障碍。缺乏一个有理论依据的、经过充分验证的、以患者为中心的工具来衡量女性癌症幸存者的自我倡导，这是推进自我倡导在改善患者预后方面所起作用的科学的一个关键障碍。一种针对女性癌症幸存者的自我倡导的新工具将提供必要的重新概念化和特异性，以确定和衡量这一概念。本仪器研究的目的是评估女性癌症幸存者的自我倡导（SACS）量表的心理测量特性。具体目的是评估：1)内部一致性和重测信度；2)结构效度。受试者将从匹兹堡大学医学中心的3个癌症诊所和匹兹堡的4个国家和地区癌症和倡导组织招募。女性必须年满18岁，并有成人癌症诊断史。在目标1中，将在诊所和组织招募40名参与者完成问卷调查、认知访谈和为期2周的随访调查。在目标2中，将从癌症登记处和癌症倡导组织招募300名参与者，完成基于网络或邮寄的问卷调查，包括SACS量表、自我倡导的关键预测因素和结果，以及评估并发效度和标准效度的措施。这项拟议的研究将首次为女性癌症幸存者创建一种有效可靠的自我倡导措施。一旦被验证，SACS量表将指导申请人未来的研究项目，以识别低自我主张风险的妇女，指导干预措施，以改善这些幸存者的自我主张，并解决国家护理研究所改善症状管理的目标。

DESCRIPTION (provided by applicant): Cancer survivors face increasing challenges to receiving quality care including an increasingly complex healthcare system, movement of cancer from an acute to a chronic disease, and overwhelming side effects and symptoms. Promoting patients' ability to self-advocate, or "stand up for one's self", is endorsed by healthcare providers and advocacy organizations as a possible solution for meeting these increasing demands, although little research has informed this practice. In other patient populations (e.g. HIV/AIDS and disabilities), self-advocacy has been thoroughly researched and been found to be modifiable factor capable of improving patient outcomes including reduced symptom distress and less healthcare utilization. Such research has not been adequately replicated with cancer survivors, especially female survivors. Symptom management is an ideal context in which to measure self-advocacy because it is an aspect of cancer survivorship that requires patient's active participation to select and implement strategies throughout the multiple stages of survivorship. Moreover, gender differences within symptom management place unique demands on female survivors since patient- and provider-level barriers exist to detecting and treating symptoms among females. A lack of a theoretically grounded, well-validated, patient-centered instrument to measure self-advocacy in female cancer survivors is a critical barrier to advancing the science of the role self-advocacy plays in improving patient outcomes. A new instrument of self-advocacy specific to female cancer survivors will provide the necessary re-conceptualization and specificity to identify and measure this concept. The purpose of this instrumentation study is to evaluate the psychometric properties of the Self-Advocacy in Cancer Survivorship (SACS) Scale among female cancer survivors. The specific aims are to evaluate: 1) internal consistency and test-retest reliability and 2) construct validity. Subjects will be recruited from 3 cancer clinics at the University of Pittsburgh Medical Center and 4 national and regional cancer and advocacy organizations in Pittsburgh. Women will be at least 18 years old and have a history of an adult cancer diagnosis. In Aim 1, 40 participants will be recruited at clinics and organizations to complete questionnaires, cognitive interviews, and a 2-week follow-up survey. In Aim 2, 300 participants will be recruited from cancer registries and cancer and advocacy organizations to complete either web-based or a mailed questionnaires including the SACS Scale, key predictors and outcomes of self-advocacy, and measures to evaluate concurrent and criterion validity. The proposed study will be the first to create an valid and reliable measure of self-advocacy specific to female cancer survivors. Once validated, the SACS Scale will guide the applicant's future program of research in identifying women at-risk for low self-advocacy, guiding interventions to improve self-advocacy among these survivors, and addressing the National Institute of Nursing Research's goal of improving symptom management.