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，但对许多人来说，癌症已成为一种可治疗的疾病，越来越多的癌症患者在确诊后存活了五年以上。最近的估计表明，英国现在有200万人生活在癌症诊断之后，其中一半以上患有乳腺癌、结肠直肠癌或前列腺癌。随着所有癌症的五年生存率总和达到50%，癌症及其治疗的长期影响，无论是生理上还是心理上，都变得越来越重要。虽然许多在确诊后存活至少5年的人报告很少或没有问题，但20-30%的人报告身体问题、生活质量较差、心理困扰、性问题、社会关系问题和经济问题。虽然癌症患者可以获得大量资源，但大多数资源的目的是在诊断和积极治疗阶段为患者提供支持。相对而言，很少有研究和资源来帮助幸存者应对积极治疗阶段之后的生活。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癌症患者。拟议的项目将继续英国癌症研究所资助的一项关于初级保健服务使用和长期癌症幸存者未满足需求的研究。作为该研究的一部分，40名被诊断患有乳腺癌、结肠直肠癌或前列腺癌后至少存活了5年的人接受了采访，询问癌症后的生活是什么样的。访谈研究采用了由牛津大学健康经验研究小组的一组社会科学家开发的定性方法，这些方法已经发展和完善了10多年，并基于严格的社会科学研究方法。这些数据将与以前参加HTO研究的其他类型癌症长期幸存者的访谈记录相结合，并重新分析，以便为HTO撰写20-25篇关于对癌症幸存者最重要的问题的摘要。专题摘要将以采访的视频、音频或文本形式加以说明。主题摘要将由研究人员起草，由另一名熟悉所有数据的研究人员检查，并由专家咨询小组的适当合格成员检查。该小组将包括癌症幸存者、社会科学家以及健康和社会护理专业人员。研究人员将与咨询小组协商，确定一个提供其他类型信息和支持的受人尊敬的国家和地方组织和网站的名单，以便将其列入网站。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，并且我们正确地确定了对更广泛的癌症幸存者重要的问题，而不是原始访谈样本中的问题。将对长期癌症幸存者进行焦点小组访谈录音，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“草案”网站，并完成一份简短的调查问卷，其中包括该网站是否满足了他们未满足的需求，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相似的观点，他们是否学到了新的东西，以及他们是否会向他人推荐该网站。HTO关于癌症之外的生活的新部分将主要作为其他癌症之外的人、他们的家人和朋友的资源，也将用于教育卫生和社会保健专业人员。

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.