Abstract:

Objective To construct a telemedicine-based home care system of palliative care for end-of-life cancer patients，and to evaluate its application effect. Methods The construction of the system was based on the literature research，interview results of the patients and their caregivers，and expert group meeting discussions. From May to August 2023，a total of 88 patients，who were about to be discharged from the palliative care ward of a cancer hospital in Hunan Province，were selected as the study subjects using a convenient sampling method，and then they were divided into an experimental group and a control group according to the order of admission. The experimental group was given home care services based on the system，while the control group was given routine discharge guidance and follow-up visits. The duration of the intervention was 8 weeks. The Chinese version of the Edmonton Symptom Assessment Scale and the Chinese version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 palliative were used to evaluate the symptom burden and quality of life between 2 groups before and after intervention；the Telemedicine Satisfaction Questionnaire was used to evaluate the care satisfaction of the experimental group. Results The system of patient side includes 8 main features，namely personal health record establishment，doctor-patient communication，palliative care knowledge library，medication assistance，smart reporting and monitoring，intelligent Q&A，intelligent follow-up，and intelligent forms. The healthcare professional side includes 7 main functions，namely workbench，case management，follow-up management，warning reminder，popularization push，statistical analysis and user management. A total of 67 patients completed the intervention，with 33 in the experimental group and 34 in the control group. The symptom burden of the experimental group was lower than that of the control group（P<0.05）；the quality of life in the experimental group was better than that in the control group（P<0.05）；the score of care satisfaction was（59.00±6.66），which indicated a high level of satisfaction. Conclusion The system can reduce the symptom burden and improve the quality of life of end-of-life cancer patients with good practicality

Key words: Cancer, End-of-Life, Palliative Care, Digital Health, Telenursing

摘要：

目的 构建终末期癌症患者远程居家安宁疗护照护系统，并评价其应用效果。 方法 基于文献研究、患者及其照护者需求访谈、专家小组会议讨论，构建终末期癌症患者远程居家安宁疗护照护系统。2023年5月—8月，采用便利抽样法，选取湖南省长沙市某三级甲等肿瘤专科医院安宁疗护病房即将出院的88例癌症患者作为研究对象，根据入院时间先后顺序分为试验组与对照组。试验组接受基于远程居家安宁疗护照护系统的居家照护，对照组接受常规出院指导和出院随访，共干预8周。采用中文版埃德蒙顿症状评估量表、中文版安宁疗护患者生活质量量表评价两组在干预前及干预后的症状负担及生活质量；采用中文版远程照护满意度问卷调查试验组的照护满意度。 结果 终末期癌症患者远程居家安宁疗护照护系统包括患者端与医护端，其中患者端包含建立个人健康档案、医患沟通、安宁疗护知识科普库、用药助手、智能报告与监测、智能答疑、智能随访、智能表单8个模块；医护端包含工作台、个案管理、随访管理、预警提醒、科普推送、统计分析、用户管理7个模块。共67例患者完成干预，其中试验组33例、对照组34例。应用效果显示，干预后试验组症状负担低于对照组、生活质量优于对照组，差异均具有统计学意义（P<0.05）；试验组中文版远程照护满意度问卷得分为（59.00±6.66）分，处于高满意度水平。 结论 使用远程居家安宁疗护照护系统可减轻终末期癌症患者的症状负担，改善患者的生活质量，具有较好的实用性。

关键词: 癌症, 终末期, 安宁疗护, 数字医疗, 远程护理