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.

项目摘要 该项目旨在开发和测试一种新的措施-循证器官清单-以改善 对变性人和非二元性别者（性别少数群体）性别认同的现有衡量 癌症研究和护理中的人群。性别少数群体在获得医疗保健方面面临许多障碍， 特别是癌症护理，这在很大程度上是由于目前筛查方案的性别性质。 流行病学数据突出显示，可改变的癌症风险因素暴露不成比例， 少数性别人群的癌症负担。然而，性别少数群体也不太可能获得适当的 癌症筛查这种不和谐的部分原因是，目前用于性别认同的措施失败了， 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，其中许多人的器官可能与其性别认同不符。这个项目 建议实施一项混合方法研究，旨在开发一种新的措施， 质量，加强对建议的少数性别癌症筛查方案的遵守， 参与者负担。该项目的具体目标包括：（1）建立一个以证据为基础的机构 英语和西班牙语这两种少数群体最常用的语言， 美国，通过对少数性别和顺性别参与者的定性研究获得信息 通过焦点小组讨论;和（2）评价器官清单在性别中的可接受性 少数群体之间的不一致性，以及对清单中报告的器官与 性别认同和出生时的性别分配，通过在线定量调查。世界职业 跨性别健康协会呼吁建立这样一个器官清单， 一个人从一个没有性别或性别特异性的名单中指出他们拥有的器官。本研究将 解决目前在衡量性别认同方面存在的重要方法差距，使我们能够改进 癌症护理和研究的资格筛查具有更高的准确性，敏感性和相关性， 比以前更广泛和更多样化的人口。对于性别少数群体，这项研究可以 转化为通过更具包容性，更少负担的措施，更准确， 数据，并最终降低癌症相关的发病率，死亡率和医疗费用，由于早期风险 侦测此外，器官清单可以推广到所有性别的人;未来的研究 可探讨将其翻译成其他语文的问题，并探讨执行《联合国器官清单》的最佳做法， 临床摄入表格，筛选清单，研究资格评估，以及更多，为所有人。