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Patient empowerment for cancer patients through a novel ICT infrastructure.
Journal of Biomedical informatics ( IF 4.0 ) Pub Date : 2019-12-06 , DOI: 10.1016/j.jbi.2019.103342
Haridimos Kondylakis 1 , Anca Bucur 2 , Chiara Crico 3 , Feng Dong 4 , Norbert Graf 5 , Stefan Hoffman 6 , Lefteris Koumakis 1 , Alice Manenti 3 , Kostas Marias 1 , Ketti Mazzocco 3 , Gabriella Pravettoni 3 , Chiara Renzi 3 , Fatima Schera 7 , Stefano Triberti 3 , Manolis Tsiknakis 1 , Stephan Kiefer 7
Affiliation  

As a result of recent advances in cancer research and "precision medicine" approaches, i.e. the idea of treating each patient with the right drug at the right time, more and more cancer patients are being cured, or might have to cope with a life with cancer. For many people, cancer survival today means living with a complex and chronic condition. Surviving and living with or beyond cancer requires the long-term management of the disease, leading to a significant need for active rehabilitation of the patients. In this paper, we present a novel methodology employed in the iManageCancer project for cancer patient empowerment in which personal health systems, serious games, psychoemotional monitoring and other novel decision-support tools are combined into an integrated patient empowerment platform. We present in detail the ICT infrastructure developed and our evaluation with the involvement of cancer patients on two sites, a large-scale pilot for adults and a small-scale test for children. The evaluation showed mixed evidences on the improvement of patient empowerment, while ability to cope with cancer, including improvement in mood and resilience to cancer, increased for the participants of the adults' pilot.

中文翻译:

通过新颖的ICT基础设施,为癌症患者增强患者权能。

由于癌症研究和“精密医学”方法的最新进展,即在正确的时间用正确的药物治疗每位患者的想法,越来越多的癌症患者被治愈,或者可能不得不应付生活。癌症。对于许多人来说,当今的癌症生存意味着要生活在复杂而慢性的疾病中。癌症的生存和生存或超出癌症的生存需要对疾病进行长期管理,从而导致对患者积极康复的重大需求。在本文中,我们介绍了iManageCancer项目中用于癌症患者赋权的一种新颖方法,该方法将个人卫生系统,严肃游戏,心理情绪监控和其他新颖的决策支持工具组合到一个集成的患者赋权平台中。我们详细介绍了已开发出的ICT基础设施和我们的评估,其中有癌症患者参与了两个地点的调查,这是针对成年人的大型飞行员和针对儿童的小型测试。评估显示,关于提高患者赋权的证据不一,而成人飞行员的参与者增强了应对癌症的能力,包括改善情绪和抗癌能力。
更新日期:2019-12-06
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