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

女性癌症幸存者自我倡导措施的开发和验证

• 批准号: 8593813
• 负责人: Teresa Hagan Thomas
• 金额: $ 4.22万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-07-01 至 2015-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8593813
• 关键词: 18 year old; AIDS/HIV problem; Acute; Address; Adult; Adverse effects; Advocacy; Advocate; Cancer Advocacy; Cancer Survivor; Cancer Survivorship; Caregivers; Characteristics; Chronic Disease; Clinic; Cognitive; Complex; Concept Review; Data; Development; Dimensions; Distress; Elements; Evidence based intervention; Face; Family member; Female; Focus Groups; Future; Goals; HIV; Health Care Costs; Health Personnel; Healthcare; Healthcare Systems; Individual; Intervention; Interview; Lead; Life; Long Term Survivorship; Mails; Malignant Neoplasms; Malignant neoplasm of ovary; Measurement; Measures; Medical center; Mental Health; Modeling; Mothers; Movement; National Institute of Nursing Research; Online Systems; Outcome; Participant; Patients; Play; Policies; Population; Property; Provider; Psychometrics; Quality of Care; Quality of life; Questionnaires; Recording of previous events; Recruitment Activity; Regional Cancer; Research; Research Personnel; Review Literature; Risk; Role; Sampling; Science; Sex Characteristics; Solutions; Specificity; Staging; Surveys; Survivors; Symptoms; Testing; Translating; Universities; Validation; Validity and Reliability; Woman; Work; advocacy organizations; base; cancer care; cancer diagnosis; cancer therapy; disability; expectation; experience; follow-up; health care service utilization; improved; innovation; instrument; instrumentation; male; meetings; member; neoplasm registry; patient oriented; patient population; prevent; programs; public health relevance; social; survivorship; symptom management; tool

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.

描述(申请人提供)：癌症幸存者在接受高质量护理方面面临着越来越多的挑战，包括日益复杂的医疗系统，癌症从急性疾病向慢性病的转移，以及压倒性的副作用和症状。医疗保健提供者和倡导组织认为，促进患者自我倡导的能力是满足这些日益增长的需求的一种可能的解决方案，尽管很少有研究了解这种做法。在其他患者群体(如艾滋病毒/艾滋病和残疾)中，已经进行了彻底的研究，发现自我倡导是能够改善患者结果的可改变因素，包括减少症状困扰和减少对医疗保健的利用。这样的研究还没有在癌症幸存者，特别是女性幸存者身上得到充分的复制。症状管理是衡量自我主张的理想环境，因为它是癌症生存的一个方面，需要患者积极参与，以在生存的多个阶段选择和实施策略。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，因为在女性中发现和治疗症状存在患者和提供者层面的障碍。缺乏一种理论上有根据的、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，这是推动自我倡导在改善患者结局中所起作用的科学研究的一个关键障碍。专门针对女性癌症幸存者的一种新的自我宣传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。这项工具研究的目的是评估癌症存活期女性患者的癌症生存自我宣传量表(SACS)的心理测量学特性。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。女性将至少18岁，并有成人癌症诊断史。在目标1中，40名参与者将在诊所和组织中被招募，以完成问卷调查、认知访谈和为期两周的后续调查。在AIM 2中，将从癌症登记和癌症和倡导组织中招募300名参与者，以完成基于网络或邮寄的问卷，包括SACS量表、关键预测因素和自我倡导的结果，以及评估同时有效性和标准有效性的措施。这项拟议的研究将是第一次创建一种针对女性癌症幸存者的有效和可靠的自我倡导措施。一旦确认，SACS量表将指导申请者未来的研究计划，识别自我倡导程度较低的高危女性，指导干预措施以改善这些幸存者的自我倡导，并满足国家护理研究所改善症状管理的目标。