Living beyond cancer: using people's experiences to develop a resource as

半个世纪前，癌症被视为一种几乎致命的疾病，现在对许多人来说，癌症已经成为一种可以治疗的疾病，越来越多的癌症患者在确诊后存活超过五年。最近的估计表明，英国现在有200万人被诊断患有癌症，其中超过一半的人患有乳腺癌、结直肠癌或前列腺癌。由于所有癌症的五年生存率加起来已经达到50%，癌症及其治疗的长期影响，无论是身体上的还是心理上的，都变得更加重要。虽然许多在确诊后至少存活5年的人报告很少或没有问题，但20%-30%的人报告说身体有问题，生活质量较差，心理困扰，性问题，社会关系问题和经济问题。虽然癌症患者可获得的资源范围很广，但大多数资源的目的是支持人们度过诊断和积极治疗阶段。帮助幸存者应对积极治疗阶段以外的生活的研究相对较少，资源也相对较少。我们对癌症幸存者的研究表明，需要互联网资源来支持越来越多的长期患有癌症的人。这项拟议的项目将是英国癌症研究中心资助的一项关于初级保健服务的使用和长期癌症幸存者未得到满足的需求的研究的后续项目。作为这项研究的一部分，40名被诊断为乳腺癌、结直肠癌或前列腺癌的人存活了至少5年，他们接受了采访，了解脱离癌症后的生活是什么感觉。这项访谈研究使用了牛津大学健康体验研究小组的一组社会科学家开发的定性方法，这些方法是在10多年的时间里发展和完善的，基于严格的社会科学研究方法。这些数据将与参加过HTO研究的其他类型癌症长期幸存者的采访录音结合在一起，并重新进行分析，以便为HTO撰写20-25份关于癌症幸存者最重要问题的摘要。主题摘要将用视频、音频或文本格式的采访片段进行说明。专题摘要将由研究人员起草，由熟悉所有数据的另一名研究人员核对，并由具有适当资格的专家咨询小组成员核对。该小组将包括癌症幸存者、社会科学家以及卫生和社会护理专业人员。研究人员将与咨询小组协商，确定一份受人尊敬的国家和地方组织以及网站的名单，这些组织和网站提供其他类型的信息和支持，以便纳入网站。在我们的项目合作伙伴DIPEx在HTO网站上发布材料之前，我们提供了几个试点焦点小组，以确保新网站反映癌症幸存者的经历，并确保我们正确地识别出对更广泛的癌症幸存者来说重要的问题，而不是原始采访样本中包括的问题。录音带将对长期癌症幸存者进行焦点小组访谈，并用于确定未得到满足的信息和支持需求。然后，参与者将被邀请浏览“草稿”网站，并完成一份简短的问卷，内容包括该网站是否满足了他们未得到满足的需求，他们认为重要的问题是否被涵盖，主题摘要中是否涵盖了与他们自己类似的观点，他们是否了解到任何新情况，以及他们是否会将该网站推荐给其他人。HTO关于超越癌症的生活的新部分将主要作为其他生活在癌症之外的人及其家人和朋友的资源，也将用于教育卫生和社会护理专业人员。

Seen as an almost fatal disease half a century ago, cancer has become a treatable disease for many, with a growing proportion of cancer patients living for more than five years after a diagnosis. Recent estimates suggest that there are now 2 million people living past a diagnosis of cancer in UK and over half of these have had breast, colorectal or prostate cancer. As the five-year survival rates for all cancers combined has reached 50%, the long-term effects of cancer and its treatments, both physical and psychological, are becoming more relevant. While many people surviving at least 5 years from diagnosis report few or no problems, 20-30% report physical problems, poorer quality of life, psychological distress, sexual problems, problems with social relationships and financial concerns. Although there is an enormous range of resources available to people with cancer, most are aimed at supporting people through the diagnosis and active treatment phases. There has been relatively little research, and few resources, to help survivors to deal with life beyond the active treatment phase. Our research with cancer survivors demonstrates the need for internet resources to support the growing number of people living with cancer long-term. The proposed project will follow on from a Cancer Research UK funded study about the use of primary care services and unmet needs of long-term cancer survivors. As part of that research, 40 people who had survived at least 5 years from diagnosis of breast, colorectal or prostate cancer were interviewed about what it is like to live beyond cancer. The interview study was conducted using qualitative methods developed by a group of social scientists in the Health experiences research group Oxford that have been developed and refined over 10 years and based on rigorous social science research methodology. These data will be combined with interview recordings from long-term survivors of other types of cancer who participated in previous HTO studies, and re-analysed for the purpose of writing 20-25 summaries for HTO on the issues that are most important to cancer survivors. The topic summaries will be illustrated with clips from the interviews in video, audio or text format. The topic summaries will be drafted by the researcher, checked by another researcher who will familiarise themselves with all the data, and by an appropriately qualified member of an expert advisory panel. The panel will include cancer survivors, social scientists and health and social care professionals. The researcher will identify, in consultation with the advisory panel, a list of respected national and local organisations and websites that provide other kinds of information and support, for inclusion on the site.Before our project partners, DIPEx, publish the material on the HTO website we offer a couple of pilot focus groups to ensure that the new site reflects the experiences of cancer survivors and that we have correctly identified the issues that are important to a broader range of cancer survivors than those included in the original interview sample. Audio tape recorded focus group interviews would be conducted with long-term cancer survivors and used to identify unmet information and support needs. Participants would then be invited to explore the 'draft' website and complete a brief questionnaire which would cover whether the site addressed their unmet needs, whether the issues that they think are important were covered, whether perspectives akin to their own had been covered in the topic summaries, if they had learnt anything new and whether they would recommend the site to others. The new section of HTO on living beyond cancer will be intended primarily as a resource for other people who are living beyond cancer, their family and friends, and will also be used to educate health and social care professionals.