乳腺癌自我管理的行为机制及移动医疗智能管理模式的实证研究

Facing the limited medical resource, mobile health (M-health) has being quickly becoming a promising innovative health management because of its convenience and low cost. M-health intelligent management models appropriate to women with breast cancer because of the necessity and complexity of self-management in the process of cancer treatment and rehabilitation. We propose to develop an intervention based on M-health intelligent management model targeting patients with breast cancer in China. A mixed methods approach will be applied in the proposed study. First, qualitative studies, such as focus-group interviews and individual longitudinal tracking based on "perceived needs record card," will be applied to better understand our target population (i.e., patients with breast cancer) in regard to their experience and care needs during cancer treatment. Second, based on the information collected in Stage 1 of our study, we will apply the method of Delphi consulting and expert working groups to determine and develop appropriate "Breast Cancer Mobile Health Smart Phone Applications" in Android system. Based on applications of the cell-phone software, we will develop a breast cancer M-health intelligent management model. Once the management model has been pilot tested, a longitudinal study will be conducted to evaluate the efficacy of the management model. Participants will be randomly assigned into the intervention (i.e., self-management model) and control groups, and then followed up four times at different stages of cancer treatment. An advanced statistical model - growth mixture model (GMM) will be applied to examine possible heterogeneity of changes in individual self-management behaviors over time; identify the patterns of the outcome changes and determine the factors that influence such patterns; and evaluate how our intervention would help patients improve their self-management behaviors and quality of life. The results of the study will provide important implications for further development and implementation of the individualized comprehensive M-health intelligent management pertinent to specific diseases, and promote the rapid development of the M-health in cancer management in China.

在医疗资源有限的现实情况下，移动医疗（M-health）以其便捷性和低成本成为21世纪最具潜力的创新卫生管理模式。乳腺癌救治过程中患者自我管理行为的必要性和复杂性，使其成为移动医疗智能管理模式的适宜人群。本课题采用混合研究（Mixed Method）设计，第一阶段通过利益人群焦点访谈和个体纵向追踪等质性研究，探索乳腺癌救治全程患者的体验及照护需求；借助Delphi咨询和专家工作组法，确定和研发"乳腺癌移动医疗智能手机应用程序"，构建基于该程序的乳腺癌移动医疗智能管理模式；第二阶段通过随机对照量性研究进行管理模式干预的有效性验证，采用发展混合模型得到乳腺癌自我管理行为随时间变化的不同纵向发展轨迹，并分析干预模式对不同轨迹的影响差异。研究结果不仅可以帮助乳腺癌人群提高自我管理行为，而且对今后探索结合单病种特质开展针对性的移动医疗管理积累有益的经验，推动移动医疗在我国卫生事业管理中的快速发展。

乳腺癌治疗的院外延续性、规范化自我管理照护支持的缺失及患者诊疗全程的困惑，使乳腺癌患者成为移动医疗健康管理的适宜人群。本课题组率先在国内开展“以个体为中心”的乳腺癌患者自我管理行为模式纵向研究，通过混合研究设计，采用个体追踪质性研究，结合相关利益人群的质性访谈，挖掘乳腺癌患者诊疗全程自我管理的需求；采用“发展混合模型”识别乳腺癌患者自我管理行为纵向发展轨迹，进而探索、形成乳腺癌患者自我管理行为的纵向变化机制；基于机制，借助文献研究、Delphi咨询和专家工作组法等多种研究方法研发了乳腺癌移动医疗健康管理智能手机应用程序——“乳腺康”，为患者提供专业、全程的健康管理策略及科学的信息支持；基于多学科合作，以及了解患者真实体验基础上的需求探索，科学构建了“乳腺康”移动医疗健康管理方案：①功能模块包括：信息浏览与检索，病程记录，运动、睡眠与体重等健康行为监测，疗程及事件提醒，在线病友交流及问卷测评等；②后台数据管理平台功能包括：用户管理、知识库管理与更新、评论管理、动态管理、短信发送及数据导出等；基于该方案，形成了乳腺癌患者移动医疗健康管理模式，其特征包括：①以临床治疗路径为门户的诊疗全程特异性信息抓取；②集“疾病管理-健康促进”一体式移动健康管理平台；③基于后台管理系统的互动式移动专业支持。以研发的“乳腺康”手机客户端为干预介质，课题组进行了移动健康管理模式的实证研究，验证了该模式具有可行性与有效性。能提供按需、预见性专业支持，有助于在医疗资源有限的现实情况下满足患者需求，促进疾病的积极转归。在项目支持下，“乳腺康”得以在瑞金等多家医院专业平台上线，真正实现了科研的实践价值。本项目共发表SCI论文10篇，中文核心期刊（含录用）22篇，获批软件著作权两项，培养硕、博士研究生7名，课题组负责人担任多个学术组织要职，多次参加国内外会议交流及授课指导。

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