OBJECTIVES Healthcare systems increasingly recognise the importance of service users' perspectives for improving care organisation and delivery. The English Cancer Patient Experience Survey (CPES) is carried out annually, however, its representativeness within cancer types is unknown. We have explored if the CPES results are representative of people with lung cancer. MATERIALS AND METHODS We linked cancer registry data across multiple sources to assess how CPES represents sociodemographic and clinical characteristics of the National Lung Cancer Audit population, accounting for post-sampling mortality bias. Multivariable logistic regression was used to compare people included and not included in CPES. RESULTS Of 240,375 people diagnosed (2009-2015), 15,967 (7 %) were included in CPES. Gender and ethnicity were reasonably represented, as were sociodemographic and clinical groupings, although more received anti-cancer treatment (96 % of CPES respondents vs. 56 % of patients nationally; adjusted odds ratio = 10.3, 95 % confidence interval 9.4-11.2 for any anti-cancer treatment) with chemotherapy most over-represented, followed by surgery and then radiotherapy. CPES under-represented older, more socioeconomically deprived, and certain clinical groups, including those with worse performance status, multiple comorbidities, and diagnosis via emergency presentation. CONCLUSION CPES includes patients across the sociodemographic and clinical spectrum indicating its value for research and service planning. Unbalanced representation of incident lung cancer cases is a limitation that must be considered in context of using CPES findings to implement service changes. Although half the national lung cancer population who received no anti-cancer treatment do not have their experiences represented, the strength of this dataset is in providing detailed comparisons of patient experiences across different treatment groups.

中文翻译：

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是英国癌症患者经验调查的代表吗？与国家肺癌审计署进行的比较分析。

目标医疗保健系统越来越认识到服务使用者的观点对于改善护理组织和提供的重要性。每年都会进行英国癌症患者经历调查（CPES），但是在癌症类型中的代表性尚不明确。我们已经研究了CPES结果是否代表肺癌患者。材料和方法我们将癌症登记数据跨多个来源进行链接，以评估CPES如何代表国家肺癌审核人群的社会人口统计学和临床​​特征，并考虑到采样后死亡率的偏倚。多变量logistic回归用于比较CPES中包括和不包括的人群。结果经诊断的240,375人（2009-2015年）中，有15,967人（7％）被纳入CPES。性别和种族得到合理代表，以及社会人口统计学和临床​​分组，尽管接受化疗的人数较多（CPES受访者为96％，而全国患者为56％；校正后的优势比= 10.3，对于任何抗癌药物，校正后的优势比= 10.3，95％置信区间9.4-11.2）。代表最多的患者，其次是手术，然后是放射治疗。CPES的代表性不足，年龄较大，社会经济匮乏的人以及某些临床组，包括表现状况较差，合并症和通过急诊就诊的那些组。结论CPES涵盖了社会人口统计学和临床​​领域的患者，表明了其在研究和服务计划中的价值。在使用CPES结果实施服务变更时，必须考虑到局限性，即肺癌事件的代表性不均衡。