iCanConnect: Using mHealth to Connect Physically Disabled Breast Cancer Patients with Matched Disabled Survivors

iCanConnect：利用移动医疗将身体残疾的乳腺癌患者与匹配的残疾幸存者联系起来

• 批准号: 9333328
• 负责人: David Victorson
• 金额: $ 8.62万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/9333328
• 关键词: Address; Advanced Malignant Neoplasm; Affect; Architecture; Assessment tool; Breast Cancer Patient; Breast Cancer survivor; Cancer Center; Cancer Patient; Cancer Survivor; Chicago; Clinics and Hospitals; Communities; Control Groups; Decision Making; Development; Devices; Diagnosis; Disabled Persons; Distress; Documentation; Educational Activities; Eligibility Determination; Enrollment; Family; Feedback; Focus Groups; Friends; Goals; Health; Illinois; Individual; Informatics; Institutional Review Boards; Intervention; Interview; Logistics; Malignant Neoplasms; Mediating; Medical Staff; Newly Diagnosed; Outcome; Outcome Assessment; Paper; Participant; Patient Outcomes Assessments; Patient Preferences; Patients; Persons; Phase; Physically Handicapped; Physicians; Pilot Projects; Population; Psychosocial Factor; Randomized; Research; Research Design; Research Infrastructure; Research Personnel; Research Support; Resources; Review Literature; Risk; Sampling; Secure; Self Efficacy; Services; Social support; Supportive care; Survivors; Tablet Computer; Technology; Testing; Training; Underserved Population; Universities; Visual; Woman; Work; base; cancer health disparity; cancer therapy; design; disability; experience; family support; functional disability; health disparity; health equity; health related quality of life; improved; mHealth; malignant breast neoplasm; organizational structure; outcome forecast; peer; peer coaching; peer support; portability; preference; programs; prototype; psychosocial; quality assurance; satisfaction; skills; social; social media; support tools; tool; touchscreen; treatment as usual; treatment center; usability; user centered design

PROJECT SUMMARY/ABSTRACT BACKGROUND: Cancer and its treatment can significantly impact health-related quality of life (HRQOL), including psychosocial distress. This is particularly true for people with disabilities with breast cancer, an unrecognized health disparities population who already live with a thinner margin of health. People with the double whammy of pre-existing disability and breast cancer are at even greater risk for decreased physical well-being and HRQOL. One-to-one peer support has shown to be an effective way to address needed supports, and tailored mHealth technologies may offer a viable solution. OBJECTIVE: To build and pilot test a new mHealth support tool called “iCanConnect”, which will enable one-to-one peer support between women with physical disabilities who recently have been diagnosed with breast cancer (mentees) with matched breast cancer survivor peers (mentors). “I” represents the informatics component, “can” represents both cancer and ability, and “connect” is the purpose of the tool The goal of this study is to examine the preliminary efficacy of this support tool to improve the psychosocial wellbeing, social connectedness, treatment decision-making support, and HRQOL of women with existing physical disabilities who have been recently diagnosed with breast cancer. STUDY DESIGN: We will conduct our study in 4 distinct phases: During Phase 1, we will develop the collaborative capacity of the investigators and programs so that we acquire the skills and develop the organizational structure to conduct this work. During Phase 2, we will engage the disability and cancer communities. This includes a literature review, expert interviews (n=8), and patient focus groups (n=30) with the purpose exploring patient preferences and needs for supportive services, as well as potential barriers to mHealth use. During Phase 3, we will develop the iCanConnect intervention based on information gathered from the literature review, expert interviews, and focus groups. We will conduct usability test (n=10) and use the feedback to develop a more complete prototype to test in a small beta study (n=10). Finally, we will pilot test the complete tool with a small mixed sample of women (n=40) with pre-existing physical disabilities and recently diagnosed with cancer, to examine its feasibility, usability, acceptance, and satisfaction.

项目概要/摘要 背景：癌症及其治疗可以显着影响健康相关的生活质量（HRQOL）， 包括社会心理困扰。对于患有乳腺癌的残疾人来说尤其如此。 未被认识到的健康差距 那些健康状况本来就较差的人群。人与 先前存在的残疾和乳腺癌的双重打击使身体下降的风险更大 福祉和 HRQOL。一对一的同伴支持已被证明是解决所需问题的有效方法 支持和定制的移动医疗技术可以提供可行的解决方案。目标：建立并试点测试 名为“iCanConnect”的新移动医疗支持工具，将实现女性之间一对一的同伴支持 患有身体残疾且最近被诊断患有乳腺癌（受训者）且乳房相匹配 癌症幸存者同伴（导师）。 “I”代表信息学部分，“can”代表癌症和 能力，而“连接”是该工具的目的。本研究的目的是检验该工具的初步功效 该支持工具可改善社会心理健康、社会联系、治疗决策 最近被诊断患有身体残疾的妇女的支持和 HRQOL 乳腺癌。研究设计：我们将分 4 个不同的阶段进行研究：在第 1 阶段，我们将 发展研究人员和项目的协作能力，以便我们获得技能并发展 开展这项工作的组织结构。在第二阶段，我们将关注残疾和癌症 社区。这包括文献综述、专家访谈 (n=8) 和患者焦点小组 (n=30) 目的是探索患者对支持服务的偏好和需求，以及潜在的障碍 移动医疗的使用。在第 3 阶段，我们将根据收集的信息制定 iCanConnect 干预措施 来自文献综述、专家访谈和焦点小组。我们将进行可用性测试（n=10）并使用 开发更完整的原型以在小型 Beta 研究中进行测试的反馈（n=10）。最后，我们将进行试点 使用预先存在身体残疾的女性小样本（n = 40）测试完整的工具， 最近被诊断出患有癌症，以检查其可行性、可用性、接受度和满意度。