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

越南目前有50多万人患有癌症，或为患有癌症的亲戚或朋友提供护理。在越南，以姑息关怀或支持单位的形式提供支持和护理的情况很少见。因此，70%的患者死于家中，在家人的照顾下。许多受癌症影响的家庭在管理严重的健康问题时，知识很少，医疗保健专业人员的帮助也很少。提供这种护理可能会对照顾者的健康和工作能力产生重大的负面影响。随着越南各地许多医院的预约被取消或治疗被推迟，这些挑战因新冠肺炎而恶化。由于这些干扰，许多家庭正在孤立地管理癌症。在“封锁”之前，我们与越南五个地区的100名患者、护理人员和医疗保健专业人员一起举办了研讨会。患者和家属报告说，他们需要紧急援助来了解癌症，管理药物治疗，日常个人护理需求，营养，伤口护理，情感问题，如何判断患者的健康是否恶化，以及何时应该寻求帮助。针对这些需求，我们于2020年3月与越南各地的癌症专家共同举办了一次研讨会，以设计一种远程数字癌症管理工具，为家庭提供他们所需的支持、信息和技能。该项目旨在开发名为V-CCC(越南-癌症护理应对)的数字资源，以支持家庭远程管理癌症。该团队已经开发了数字支持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可能对患者和照顾者预后的影响；3)探索V-CCC在全国的使用情况。我们将通过一个由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组成的庞大团队共同努力，开发尽可能最佳的数字建议和信息。专家数字支持团队将在线传输此信息，以确保其易于使用，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、湄公河、顺化、岘港和残修)的50名照顾者参加的工作坊中演示V-CCC。将根据此反馈对V-CCC进行更改。然后，我们将在五家癌症医院(河内、胡志明市、残寿、岘港和顺化)与150名照顾者(如果愿意的话，还有患者)一起评估V-CCC。肿瘤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)。癌症护理人员将被提供一个网络链接和进入V-CCC的代码，为期两周。参与者将被要求完成与他们最初完成的相同的后续调查。然后，我们将通过Skype对一系列照顾者进行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名卫生保健专业人员分享他们对V-CCC采访的想法和经验。评估后，合作伙伴将通过医院诊所、候诊室、倡导团体和社交媒体在越南各地广泛分发V-CCC。我们将使用谷歌分析来探索有多少人从哪个地区访问资源，以及他们使用资源的时间。我们希望V-CCC将减少隔离、管理不善以及因新冠肺炎而增加的癌症结局的最终恶化。我们将与哥伦比亚、乌干达和马来西亚的学术伙伴交流我们在这个项目中学到的经验教训，以便他们也能够了解远程数字管理工具在这些国家可能是如何有用的。

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.