Toward an improved screening protocol: developing and testing an organ inventory for strengthening clinical care and research

改进筛查方案：开发和测试器官库存以加强临床护理和研究

• 批准号: 10267764
• 负责人: Heidi Serene Moseson Lidow
• 金额: $ 12.98万
• 依托单位: IBIS REPRODUCTIVE HEALTH
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-22 至 2023-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10267764
• 关键词: Address; Adherence; Alcohol consumption; Anatomy; Birth; Cancer Burden; Caring; Cervical Cancer Screening; Cervix Uteri; Classification; Clinical; Clinical Research; Communities; Data; Detection; Development; Discrimination; Eligibility Determination; Equipment and supply inventories; Evaluation; Excision; Exposure to; Face; Failure; Female; Focus Groups; Gender; Gender Identity; Genital; Genitalia; Health; Health Care Costs; Health Care Research; Hormone use; Hormones; Hysterectomy; Insurance Coverage; Intake; Intersex; Language; Lead; Malignant Neoplasms; Malignant neoplasm of cervix uteri; Malignant neoplasm of ovary; Malignant neoplasm of testis; Measurement; Measures; Methodology; Methods; Minority Groups; Morbidity - disease rate; Nature; Obesity; Operative Surgical Procedures; Organ; Ovary; PSA screening; Pap smear; Participant; Persons; Population Heterogeneity; Prevention Guidelines; Professional Organizations; Provider; Qualitative Research; Reporting; Research; Research Personnel; Risk; Risk Factors; Screening for cancer; Sexual Development; Smoking; Surveys; Testing; Training; Translating; Translations; United States; Uterine Cancer; Uterus; Variant; anticancer research; barrier to care; base; cancer care; cancer diagnosis; cancer prevention; cancer risk; cisgender; clinical care; cost; data quality; epidemiologic data; evidence base; experience; falls; gender dysphoria; gender minority; health care availability; improved; male; man; mortality; nonEnglish language; novel; research study; response; screening; screening guidelines; sex; standard measure; transgender; transgender men

PROJECT SUMMARY This project aims to develop and test a novel measure – an evidence-based organ inventory – to improve upon existing measurement of gender identity among transgender and gender nonbinary (gender minority) populations in cancer research and care. Gender minorities face numerous barriers to healthcare access, and specifically to cancer care, in large part due to the gendered nature of current screening protocols. Epidemiological data highlight disproportionate exposure to modifiable cancer risk factors and disproportionate cancer burden among gender minorities. However, gender minorities are also less likely to receive appropriate cancer screening. This discord is, in part, due to the failure of current measures of gender identity used in research and clinical care to provide the requisite information for cancer screening, care, and research for gender minorities, many of whom may have organs that are inconsistent with their gender identity. This project proposes to implement a mixed methods study aimed at developing a novel measure that will improve data quality, strengthen adherence to recommended cancer screening protocols for gender minorities, and reduce participant burden. The specific aims of this project include the (1) development of an evidence-based organ inventory in English and Spanish, the two most common languages spoken among gender minorities in the United States, informed by qualitative research with both gender minority and cisgender participants collected via focus group discussions; and (2) evaluation of the acceptability of the organ inventory among gender minorities, and estimation of the discordance between organs present as reported in the inventory versus gender identity and sex assigned at birth, via an online, quantitative survey. The World Professional Association for Transgender Health has called for such an organ inventory, a measure that would ask each person to indicate the organs that they have from a list that is not gender- or sex-specific. This study will address important methodological gaps in current measurement of gender identity and enable us to improve eligibility screening for cancer care and research with greater accuracy, sensitivity, and relevance, across a broader and more diverse population than previously possible. For gender minorities, this research could translate to increased research participation via more inclusive, less burdensome measures, more accurate data, and ultimately, reduced cancer-related morbidity, mortality, and healthcare costs due to earlier risk detection. Further, the organ inventory could be generalizable for people of all genders; and future research could explore translation into other languages and best practices for implementing the organ inventory in clinical intake forms, screening checklists, research eligibility assessment, and more, for all people.

项目概要 该项目旨在开发和测试一种新的措施——基于证据的器官清单——以改进 对跨性别者和非二元性别（性别少数）性别认同的现有衡量 癌症研究和护理领域的性别少数群体在获得医疗保健方面面临着许多障碍，以及 特别是癌症护理，很大程度上是由于当前筛查方案的性别性质。 流行病学数据强调不成比例地暴露于可改变的癌症危险因素和不成比例的癌症风险因素中。 性别少数群体的癌症负担 然而，性别少数群体也不太可能获得适当的治疗。 这种不一致的部分原因是目前用于癌症筛查的性别认同措施的失败。 研究和临床护理，为癌症筛查、护理和研究提供必要的信息 性别少数群体，其中许多人可能拥有与其性别认同不一致的器官。 提议实施一项混合方法研究，旨在开发一种改进数据的新措施 质量，加强对性别少数群体推荐的癌症筛查方案的遵守，并减少 该项目参与者的具体目标包括（1）建立一个循证机构。 英语和西班牙语是性别少数群体最常用的两种语言 美国，通过对少数性别和顺性别参与者收集的定性研究提供信息 通过焦点小组讨论；(2) 评估器官清单在性别中的可接受性 少数群体，以及对清单中报告的器官与 性别认同和出生时的性别，通过《世界专业人士》在线定量调查得出。 跨性别健康协会呼吁建立这样的器官清单，这项措施将要求每个人 人从不区分性别或性别的列表中指出他们拥有的器官。 解决当前性别认同衡量中的重要方法论差距，并使我们能够改进 癌症治疗和研究的资格筛查具有更高的准确性、敏感性和相关性 对于性别少数群体来说，这项研究可能比以前更广泛、更多样化。 通过更具包容性、更轻松、更准确的措施转化为更多的研究参与 数据，最终降低了由于早期风险而导致的癌症相关发病率、死亡率和医疗费用 此外，器官清单可以推广到所有性别的人；以及未来的研究。 可以探索翻译成其他语言以及实施器官清查的最佳实践 适合所有人的临床登记表、筛查清单、研究资格评估等。