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: 9044501
• 负责人: David Victorson
• 金额: $ 7.55万
• 依托单位: NORTHWESTERN UNIVERSITY AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-24 至 2018-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9044501
• 关键词: Address; Advanced Malignant Neoplasm; Affect; Architecture; Breast Cancer Patient; Breast Cancer survivor; Cancer Center; Cancer Survivor; Chicago; Clinics and Hospitals; Communities; Control Groups; Decision Making; Development; Devices; Diagnosis; Disabled Persons; Distress; Documentation; Educational Activities; Enrollment; Family; Feedback; Focus Groups; Friends; Goals; Health; Illinois; Individual; Informatics; Institutional Review Boards; Intervention; Interview; Life; Logistics; Malignant Neoplasms; Mediating; Medical Staff; Mentors; Newly Diagnosed; Outcome; Outcome Assessment; Paper; Participant; Patient Outcomes Assessments; Patient Preferences; Patients; Personal Satisfaction; Persons; Phase; Physically Handicapped; Physicians; Pilot Projects; Population; Psychosocial Factor; Randomized; Research; Research Infrastructure; Research Personnel; Research Support; Resources; Review Literature; Risk; Sampling; Secure; Self Efficacy; Services; Social support; Solutions; Supportive care; Survivors; Tablet Computer; Technology; Testing; Training; Underserved Population; Universities; Visual; Woman; Work; abstracting; base; cancer health disparity; cancer therapy; design; disability; experience; functional disability; health disparity; health equity; health related quality of life; improved; information gathering; mHealth; malignant breast neoplasm; organizational structure; outcome forecast; peer; physical conditioning; preference; programs; prototype; psychosocial; quality assurance; satisfaction; skills; social; 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.

项目摘要/摘要 背景：癌症及其治疗可显著影响健康相关生活质量(HRQOL)， 包括社会心理方面的困扰。对于患有乳腺癌的残疾人士来说尤其如此， 健康差距未被认识到的人群已经生活在较小的健康边际。有此病的人 先前存在的残疾和乳腺癌的双重打击更有可能导致体能下降 幸福感和HRQOL。一对一对等支持已被证明是解决所需问题的有效方法 支持和量身定制的mHealth技术可能会提供可行的解决方案。目标：建立和试运行一个 名为“iCanConnect”的新mHealth支持工具，它将实现女性之间的一对一同伴支持 最近被诊断患有乳腺癌的肢体残疾患者(被辅导者)的乳房相配 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”是工具的目的，本研究的目的是考察其初步疗效 这一支持工具可改善心理社会福祉、社会联系、治疗决策 最近被诊断为有肢体残疾的女性的支持和HRQOL 乳腺癌。研究设计：我们将分四个不同的阶段进行研究：在第一阶段，我们将 发展调查人员和项目的协作能力，以便我们获得技能并开发 开展这项工作的组织结构。在第二阶段，我们将让残疾和癌症患者 社区。这包括文献回顾、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性服务的偏好和需求，以及 MHealth的使用。在第3阶段，我们将根据收集的信息制定iCanConnect干预 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 反馈以开发更完整的原型以在小规模Beta研究中进行测试(n=10)。最后，我们将试行 用一小部分混合样本测试完整的工具(n=40)，这些女性既有身体残疾，又有 最近被诊断为癌症，以检查其可行性、可用性、接受度和满意度。