He Yi, Pang Ying, Liu Ying, Li Zimeng, Wang Yan, Zhang Yening, Su Zhongge, Song Lili, He Shuangzhi, Wang Bingmei, Tang Lili
Key Laboratory of Carcinogenesis and Translational Research (Ministry of Education/Beijing), Department of Psycho-Oncology, Peking University Cancer Hospital & Institute, 52 Fucheng Road, Haidian District, Beijing, 100142, China, 86 1088196019.
Jiuzhong Technology (Beijing) Co., Ltd, Beijing, China.
JMIR Cancer. 2025 Aug 7;11:e64977. doi: 10.2196/64977.
Online communities, platforms that facilitate social connections, have gained attention in the medical field, particularly for their potential to support patients. However, there is currently no online community specifically designed for patients with cancer receiving outpatient care. This study introduces a customized online community aimed at providing companionship and sharing to enhance the quality of life (QOL) among these patients.
The purpose of this study was to assess the feasibility and initial effectiveness of a newly developed online community app in improving the QOL of patients with cancer receiving outpatient care.
This pilot intervention-only study involved patients with cancer participating in a 4-week online community intervention through a mobile app. Eligible patients were aged 18 years or older, diagnosed with cancer, with an Eastern Cooperative Oncology Group Performance Status score of ≤2. The feasibility of the intervention was evaluated by community task participation rate, community task completion rate, and community daily login rate. Patients completed a QOL questionnaire (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30, QLQ-C30) at baseline (T0), week 2 (T1), and week 4 (T2). After the intervention, participants were free to answer 3 questions about their user experience.
Baseline assessments were conducted on 30 patients, with 25 patients assessed at T1 (83.3%) and 22 at T2 (73.3%). The 4-week average community daily login rate was 60.37% (18.11/30 on average), with community task participation and community task completion rates reaching 42.25% (12.68/30 on average) and 22.38% (6.7/30 on average), respectively. Notably, after the study ended, participants continued logging into the app and completing tasks. Patients who actively engaged in community activities demonstrated significant improvements in global health status (mean 11.04, SD 10.3 vs mean -6.56, SD 11.58; P=.004), emotional function (mean 17.7, SD 22.93 vs mean -2.89, SD 13.9; P=.04), and constipation (mean 11, SD 16.5 vs mean 14.67, SD 17.39; P=.005) at T2, compared to those less active. The intervention enhanced emotional functioning and overall health and alleviated insomnia symptoms among active participants.
The online community intervention, emphasizing companionship and sharing, was well accepted by patients with cancer and demonstrated initial effectiveness in enhancing the QOL. The study findings suggest that such interventions can provide a supportive environment for patients to cope with psychological, social, and physical challenges. Future validation of its effectiveness will require well-designed randomized controlled trials, and continued optimization tailored to specific user groups will be crucial to meet the evolving needs of the community. The core value of the online community lies in companionship and sharing, which can serve as a foundation for future research and development in this area.
在线社区作为促进社交联系的平台,在医学领域受到了关注,尤其是其对患者的支持潜力。然而,目前尚无专门为接受门诊治疗的癌症患者设计的在线社区。本研究引入了一个定制的在线社区,旨在为这些患者提供陪伴并促进分享,以提高其生活质量(QOL)。
本研究旨在评估新开发的在线社区应用程序在改善接受门诊治疗的癌症患者生活质量方面的可行性和初步效果。
这项仅进行试点干预的研究让癌症患者通过移动应用程序参与为期4周的在线社区干预。符合条件的患者年龄在18岁及以上,被诊断患有癌症,东部肿瘤协作组体能状态评分≤2。通过社区任务参与率、社区任务完成率和社区每日登录率来评估干预的可行性。患者在基线(T0)、第2周(T1)和第4周(T2)完成一份生活质量问卷(欧洲癌症研究与治疗组织生活质量问卷核心30项,QLQ-C30)。干预结束后,参与者可自由回答3个关于其用户体验的问题。
对30名患者进行了基线评估,T1时有25名患者(83.3%)接受了评估,T2时有22名患者(73.3%)接受了评估。4周的社区平均每日登录率为60.37%(平均18.11/30),社区任务参与率和社区任务完成率分别达到42.25%(平均12.68/30)和22.38%(平均6.7/30)。值得注意的是,研究结束后,参与者仍继续登录应用程序并完成任务。积极参与社区活动的患者在T2时的总体健康状况(均值11.04,标准差10.3,对比均值-6.56,标准差11.58;P=0.004)、情绪功能(均值17.7,标准差22.93,对比均值-2.89,标准差13.9;P=0.04)和便秘(均值11,标准差16.5,对比均值14.67,标准差17.39;P=0.005)方面,与不太活跃的患者相比有显著改善。该干预增强了积极参与者的情绪功能和整体健康状况,并减轻了失眠症状。
强调陪伴和分享的在线社区干预受到了癌症患者的广泛接受,并在提高生活质量方面显示出初步效果。研究结果表明,此类干预可为患者应对心理、社会和身体挑战提供支持性环境。其有效性的未来验证需要精心设计的随机对照试验,针对特定用户群体持续优化对于满足社区不断变化的需求至关重要。在线社区的核心价值在于陪伴和分享,可为该领域未来的研究和发展奠定基础。