癌症生存者疲乏自我管理分层支持模型构建和基于移动应用适配干预研究

The improvement in survival rates has resulted in a rising number of cancer survivors. Cancer-related fatigue (CRF) is one of the most common symptoms experienced by cancer survivors, which would lead to a series of negative outcomes and impede the process of rehabilitation. Much attention should be paid to alleviate this distressing symptom. Self-management empowers cancer survivors to take more control over their life and serves as an important approach to manage CRF. The effect of current CRF self-management support programs have been restricted due to its lack of specificity and sustainability. Literature review indicates a gap in delivering individualized self-management support for CRF in the form of mobile application (mobile app). The current study applies a mixed research approach to address the gap. This study has two phases. Phase one aims to develop a tiered support model for CRF self-management, which would be based on extensive literature review, cancer survivors focus group study and health professional expert evaluation. Phase two aims to design and evaluate a mobile app that supports the tiered support model developed in phase one, which is composed of participatory design, technical test and randomized controlled trial. In recognition of the subjective and multifactorial nature of CRF, adaptive intervention design is used for the intervention group to decide the appropriate self-management support module according to CRF level. Periodic assessment of CRF is to be implemented for adapting intervention. Self-efficacy theory is the core underpinning theory employed to enhance self-management for each module. This study is significant. The establishment of tiered self-management support program and the use of adaptive intervention would help to achieve a more accurate and individualized self-management support. The development process of mobile app involves the participatory design of cancer survivors, and it has continuous refinement function, thereby it could give important implication for the use of new technology in cancer care system.

自我管理是癌症生存者日趋增多背景下缓解癌因性疲乏的重要手段，目前尚较少研究探讨如何利用移动应用对癌因性疲乏进行个性化自我管理支持。本项目通过文献研究、癌症生存者疲乏自我管理支持需求研究、专家评价，设计自我管理支持模块和分层支持模型；以该模型为框架，迭代设计具有交互功能的移动应用，分层推荐自我管理支持模块，应用适配干预，达到个性化自我管理支持目标。模型构建应用小组访谈法、专家论证法；移动应用设计与评价应用癌症生存者参与设计、软件工程师需求分析、小样本测试、随机对照试验。干预组适配干预基于疲乏水平选择干预方案，并通过周期评价进行干预调整，使干预符合个体特点。自我效能理论为每个模块干预设计的核心指导理论。本项目通过分层支持模型和适配干预，有利于提高自我管理干预精准程度，增强癌因性疲乏的管理效率；并通过癌症生存者参与设计和动态完善移动应用，为新技术在癌症照护中的开展提供路径参考。

自我管理是癌症生存者日趋增多背景下缓解癌因性疲乏的重要手段，目前尚较少研究探讨如何利用移动应用对癌因性疲乏进行个性化自我管理支持。本项目旨在构建基于移动健康的癌因性疲乏自我管理支持方案，共分三个阶段完成，采用混合研究方法，包括证据评价、半结构访谈、认知访谈、专家咨询法、问卷法、前后对照试验法。阶段一为癌因性疲乏自我管理支持需求分析，并设计基于社交软件微信公众号的癌因性疲乏自我管理支持；研究结果表明癌症患者对疲乏自我管理支持需求普遍，对简单、易操作、信息可靠的移动健康平台需求大，本项目所设计的“症状自我管理”癌因性疲乏模块获得患者的积极肯定。阶段二为研制和评价癌因性疲乏综合筛查工具，为癌因性疲乏分层干预提供筛查工具；结果表明“癌因性疲乏综合筛查量表”有症状和影响因素（身体活动、饮食、认知、睡眠四个维度）两个分量表，具有较好的信度（Cronbach α 0.624~0.733），探索性因子分析结果表明各公因子解释总方差>55%；验证性因子分析各拟合指数良好，可用于癌因性疲乏影响因素的筛查，为分层干预方案构建提供工具。阶段三分为两个内容，内容一为癌因性疲乏个性化运动方案构建与“疲乏慧管”移动微信小程序“慧动”模块设计，内容二为癌因性疲乏饮食个性化支持方案构建与“慧吃”模块设计。本阶段所设计的运动和饮食个性化管理方案，结合运动学、护理学、营养学、康复学专家意见，具有一定的科学性与实用性；基于患者适用性评价，可为癌症患者疲乏的自我管理提供可靠的支持平台。运动自我管理方案实施以跨理论模型为理论框架，注重个体行为改变过程的循序渐进；饮食自我管理支持以认知行为理论为框架，从认知、行动角度干预。“疲乏慧管”微信小程序具有筛查、提醒、反馈等功能，实现了与用户的双向交互，为新技术在癌症照护中的开展提供路径参考。