A web-based intervention to promote follow-up care communication and functional status of Chinese immigrant breast cancer survivors

基于网络的干预措施促进中国移民乳腺癌幸存者的后续护理沟通和功能状态

• 批准号: 9316194
• 负责人: Judy Huei-yu Wang
• 金额: $ 22.34万
• 依托单位: GEORGETOWN UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-04-01 至 2019-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9316194
• 关键词: Address; Adherence; Adverse effects; American; Asians; Breast Cancer Patient; Breast Cancer survivor; Breast Cancer survivorship; Cancer Survivor; Cancer Survivorship; Caring; Chinese American; Chinese People; Clinical; Communication; Communication Programs; Communities; Comorbidity; Competence; Data; Diagnosis; Distal; Distress; Emotional; Enrollment; Focus Groups; Generations; Guidelines; Health; Health Personnel; Healthcare; Home environment; Immigrant; Incidence; Individual; Information Systems; Institute of Medicine (U.S.); Instruction; Internet; Intervention; Interview; Limited English Proficiency; Linguistics; Los Angeles; Mainstreaming; Malignant Neoplasms; Measurement; Mediating; Medical; Not Hispanic or Latino; Online Systems; Outcome; Participant; Patient Education; Patient Outcomes Assessments; Patient Rights; Patients; Phase; Physical Function; Population; Productivity; Provider; Quality of Care; Quality of life; Randomized; Randomized Controlled Trials; Reporting; Research; Resources; Role; Running; Self Efficacy; Self Management; Stress; Subgroup; Survivors; Symptoms; Telephone Interviews; Testing; United States; Visit; Woman; Work; aged; arm; authority; bilingualism; cancer care; clinical practice; community based participatory research; cultural values; design; efficacy testing; ethnic difference; experience; follow-up; functional status; health care quality; health disparity; improved; improved outcome; interactive tool; intervention program; malignant breast neoplasm; neoplasm registry; novel strategies; persistent symptom; physical symptom; programs; prospective; psychologic; randomized trial; research study; response; skills; social; social cognitive theory; socioeconomics; symptom management; symptomatic improvement; therapy design; tool; treatment as usual; usability; web site

PROJECT SUMMARY/ABSTRACT Communication with doctors is essential for cancer survivors to manage treatment-related side effects and promote their functioning. However, Chinese immigrant cancer survivors consistently report poorer communication with doctors than non-Hispanic White (NHW) survivors. This is likely related to the Chinese cultural value of complying with authorities to maintain social harmony which goes against the American cultural value of patient autonomy; thus, Chinese are less likely to express their concerns and needs to doctors, increasing challenges in treating their cancer-related symptoms. Our data showed that Chinese immigrant breast cancer survivors (BCS) had more physical problems and poorer physical functioning than NHW BCS. Chinese Americans' breast cancer incidence rates are steadily increasing and over 90% of breast cancer patients survive over 5 years. Yet, there are no interventions designed to improve Chinese immigrant survivors' follow-up care communication with doctors about symptom management. About 76% of Chinese Americans are foreign-born, the fastest growing immigrant group in the US. We propose a two-phase research study to develop and evaluate a culturally appropriate, web-based intervention program called E-Talkcare to enhance Chinese immigrant BCS' communication competence and functional status. Guided by communication and social cognitive theories, we will use community-based participatory research principles to develop E-Talkcare to educate Chinese immigrant BCS on how to seek, provide, and verify information with doctors and provide a platform for them to build English-Chinese symptom reports and question prompt lists (QPL)for medical visits. For phase I, we will convene a community advisory board and run two focus groups with at least 16 Chinese immigrant BCS, and individual interviews with 5-7 Chinese BCS to test the usability of E-Talkcare. In phase II, we will conduct a randomized controlled trial to pilot test the efficacy of E-Talkcare in enhancing Chinese BCS' communication, perceived control, and self-efficacy (intermediate outcomes), as well as symptom distress, adherence to breast cancer survivorship care guidelines, and quality of life (distal outcomes) by using the Chinese patient-reported outcomes measurement information system (PROMIS®) short forms. Using Los Angeles (LA) cancer registry cases, we will enroll 118 Chinese immigrant BCS with stage 0-III breast cancer, aged 18 or older, and within 1-3 years post-diagnosis. They will be randomized to either the E-Talkcare intervention or usual care control arms. The full intervention can be completed in ~30 minutes. Participants will be telephone interviewed at baseline, and 3-months and 6-months post-randomization. E-talkcare is the first culturally relevant e-communication program for Chinese BCS. The use of bilingual PROMIS® symptom reports and QPL is a novel approach for the target group. This study is prospective in identifying culturally efficacious tools to assist clinical practice to reach and care for this underserved but growing immigrant population.

项目概要/摘要 与医生的沟通对于癌症幸存者管理与治疗相关的副作用和 然而，中国移民癌症幸存者一直报告自己的生活状况较差。 与医生的沟通高于非西班牙裔白人（NHW）幸存者 这可能与华人有关。 服从当局维持社会和谐的文化价值观与美国的价值观背道而驰 患者自主的文化价值；因此，中国人不太可能向医生表达他们的担忧和需求， 我们的数据显示，中国移民在治疗癌症相关症状方面面临越来越大的挑战。 与 NHW BCS 相比，乳腺癌幸存者 (BCS) 的身体问题更多，身体功能更差。 美国华裔乳腺癌发病率稳步上升，90%以上为乳腺癌 然而，目前尚无旨在改善中国移民幸存者生存状况的干预措施。 约 76% 的华裔美国人与医生进行后续护理沟通。 是在外国出生的，是美国增长最快的移民群体，我们提出了一项分两阶段的研究。 开发和评估一种文化上适当的、基于网络的干预计划，称为 E-Talkcare，以增强 中国移民BCS的沟通能力和功能状态以沟通和引导为导向。 社会认知理论，我们将利用基于社区的参与性研究原则来开发E-Talkcare 教育中国移民 BCS 如何寻求、提供和向医生核实信息，并提供 为他们建立英汉症状报告和就诊问题提示列表（QPL）的平台。 对于第一阶段，我们将召集一个社区咨询委员会并运行两个由至少 16 名中国人组成的焦点小组 移民 BCS，并对 5-7 个中国 BCS 进行单独访谈，以测试 E-Talkcare 的可用性。 我们将进行一项随机对照试验来初步测试 E-Talkcare 在增强中国 BCS 方面的功效 沟通、感知控制和自我效能（中间结果）以及症状困扰， 遵守乳腺癌生存护理指南和生活质量（最终结果） 中国患者报告结果测量信息系统 (PROMIS®) 使用损失简表。 安吉利斯（LA）癌症登记案例，我们将登记118名患有0-III期乳腺癌的中国移民BCS， 年满 18 岁且在诊断后 1-3 年内他们将被随机分配至 E-Talkcare。 干预或常规护理对照组。完整的干预可在约 30 分钟内完成。 基线时进行电话访谈，随机化后 3 个月和 6 个月进行 E-talkcare 访谈。 针对中国 BCS 的文化相关电子通讯计划 使用双语 PROMIS® 症状报告。 QPL 是针对目标群体的一种新颖方法，这项研究在确定文化有效性方面具有前瞻性。 帮助临床实践接触和照顾这一服务不足但不断增长的移民人口的工具。