GCRF_NF72 Development, evaluation and implementation of a digital support to improve the management of cancer and mitagate the impact of COVID-19

目前，越南有超过50万人患有癌症或为患有癌症的亲戚或朋友提供护理。姑息治疗或支持单位形式的支持和护理在越南很少见。结果，70%的病人死在家中，由家人照料。许多受癌症影响的家庭对严重的健康问题知之甚少，也没有得到卫生保健专业人员的帮助。提供这种护理会对护理者的健康和工作能力产生重大的负面影响。由于新冠肺炎疫情，越南各地许多医院的预约被取消或治疗被推迟，这些挑战变得更加严重。由于这些干扰，许多家庭正在孤立地应对癌症。在“封锁”之前，我们在越南五个地区与100名患者、护理人员和卫生保健专业人员举办了讲习班。病人和家属报告说，他们在了解癌症、管理药物、日常个人护理需求、营养、伤口护理、情绪问题、如何判断病人的健康状况是否恶化以及何时应该寻求帮助等方面需要紧急援助。为了满足这些需求，我们于2020年3月与来自越南各地的癌症专家举办了一次研讨会，设计一种远程数字癌症管理工具，为家庭提供所需的支持、信息和技能。该项目旨在开发名为V-CCC（越南癌症关怀应对）的数字资源，以支持家庭远程管理癌症。该团队开发了数字支持V-CCC的书面版本。该项目将1)开发V-CCC的数字版本2)评估V-CCC可能对患者和护理结果的影响3)探索V-CCC在全国的使用情况。我们将与来自越南所有地区的医生、护士、护理人员、患者、学者和联合卫生专业人员共同努力，开发尽可能最好的数字建议和信息。一个专业的数字支持团队将把这些信息转移到网上，确保它很容易使用，例如视频/图片/互动游戏。我们将在来自越南五个不同地区（河内、胡志明市、顺化、岘港和芹苴）的50名护理人员参加的研讨会上展示V-CCC。我们会根据这个反馈对V-CCC进行修改。然后，我们将与五家癌症医院（河内、胡志明市、芹苴、岘港和顺化）的150名护理人员（如果愿意的话，还有患者）一起评估V-CCC。癌症医院的护士将招募参与者并协助他们完成基线测量（心理健康、生活质量、健康素养）。癌症护理人员将获得V-CCC的网站链接和访问代码，为期两周。参与者将被要求完成与他们开始时相同的后续调查。然后，我们将通过Skype与一系列护理人员进行30次在线访谈，以探索他们使用V-CCC的经验。我们还将邀请N=15位医疗保健专业人士分享他们对V-CCC访谈的想法和经验。评估完成后，合作伙伴将利用医院诊所、候诊室、宣传团体和社交媒体在越南各地广泛传播V-CCC。我们将使用谷歌分析来探索有多少人访问该资源，来自哪个地区以及他们使用该资源的时间。我们希望V-CCC能够减少因COVID-19而增加的隔离，管理不善和最终恶化的癌症结果。我们将与哥伦比亚、乌干达和马来西亚的学术合作伙伴交流在这个项目中获得的经验，以便他们也能了解远程数字管理工具在这些国家的用处。

Over half a million people in Vietnam currently live with cancer or provide care to a relative or friend with the disease. Support and care in the form of palliative care or supportive units are rare in Vietnam. As a result, 70% of patients die at home, in the care of their families. Many families affected by cancer manage severe health issues with minimal knowledge and little help from health care professionals. Providing this care can have a significant negative impact on the carer's health and their ability to work. These challenges have worsened due to COVID-19 as many hospitals appointments throughout Vietnam were cancelled or treatments postponed. As a consequence of these disruptions, many families are managing cancer in isolation. Prior to 'lockdown', we conducted workshops with 100 patients, carers and health care professionals across five regions of Vietnam. Patients and families reported that they require urgent assistance to understand cancer, manage medications, daily personal care needs, nutrition, wound care, emotional issues, how to tell if a patient's health is getting worse and when you should seek help. In response to these needs, we hosted a workshop in March 2020 with cancer experts from across Vietnam to design a remote digital cancer management tool to provide families the support, information and skills they require. This project aims to develop this digital resource called V-CCC (Vietnam -Cancer Caring Coping) to support families to manage cancer remotely. The team have developed a written version of the digital support V-CCC. This project will 1) Develop the digital version of V-CCC 2) Evaluate the impact V-CCC may have on patient and carer outcomes 3) Explore V-CCC usage throughout the country. We will develop the best possible digital advice and information by working together as a large group of doctors, nurses, carers, patients, academics and allied health professionals from across all regions of Vietnam. An expert digital supports team will transfer this information online ensuring that it is easy to use e.g. videos/pictures/ interactive games. We will demonstrate the V-CCC in workshops involving 50 carers from five different regions of Vietnam (Hanoi, HCMC, Hue, Danang and Can Tho). Changes will be made to V-CCC based on this feedback. We will then evaluate the V-CCC with 150 carers (and patients if willing) across five cancer hospitals (Hanoi, Ho Chi Mhin City, Can Tho, Danang and Hue). Nurses in cancer hospitals will recruit participants and assist them to complete baseline measures (mental health, quality of life, health literacy). Cancer carers will be provided with a web-link and access code to V-CCC for two weeks. Participants will be asked to complete follow-up surveys identical to those they completed at the onset. We will then conduct 30 online interviews over Skype with a range of carers to explore their experiences of using V-CCC. We will also ask N=15 Health Care professionals to share their thoughts and experiences of V-CCC interviews. Following evaluation, partners will widely distribute V-CCC throughout Vietnam using hospital clinics, waiting rooms, advocacy groups and social media. We will use google analytics to explore how many people access the resource, from which region and how long they use the resource for. We hope that V-CCC will reduce isolation, poor management and ultimately deterioration of cancer outcomes that have increased due to COVID-19. The lessons we learn during this project will be exchanged with our academic partners in Colombia , Uganda and Malaysia so that they too can learn how remote digital management tools may be useful in those countries.