Wagland Richard, Bracher Mike, Drosdowsky Allison, Richardson Alison, Symons John, Mileshkin Linda, Schofield Penny
Faculty of Health Sciences, University of Southampton, Southampton, UK.
Department of Human Sciences and Public Health, Faculty of Health and Social Sciences, Bournemouth University, Bournemouth, UK.
BMJ Open. 2017 Sep 27;7(9):e017881. doi: 10.1136/bmjopen-2017-017881.
To explore differences in experiences of care reported in the Cancer Patient Experience Survey (CPES) between patients with cancer of unknown primary (CUP) and those with metastatic disease of known primary (non-CUP); to determine insights pertaining to the experiences of care for CUP respondents from free-text comments.
Two separate, but related, studies, involving secondary analysis of existing data. Using frequency matching of CUP and non-CUP patients, statistical comparisons of responses to CPES questions were conducted. Free-text comments from CUP respondents were analysed thematically.
The CPES questionnaire comprises 63 closed questions measuring 8 areas that relate to experience of care and 3 free-text questions. Questionnaires were mailed to all adult patients (aged ≥16 years) in England with cancer admitted to hospital between 1 September 2013 and 30 November 2013.
Matched analysis of closed response items from 2992 patients found significant differences between CUP (n=1496) and non-CUP patients (n=1496): CUP patients were more likely to want more written information about their type of cancer and tests received, to receive their diagnosis from a general practitioner (GP) and have seen allied health professionals, but less likely to have understood explanations of their condition or had surgery. Freetext responses (n=3055) were coded into 17 categories and provided deeper insight regarding patient information and interactions with GPs. CPES data may include a preponderance of patients with favourable CUP subtypes and patients initially identified as CUP but whose primary was subsequently identified.
These are the first large-scale studies to explore the experiences of care of CUP patients. The significant differences identified between the experiences of CUP and non-CUP patients suggest CUP patients require more psychosocial support and specific interventions to manage diagnostic uncertainty and the multiple investigations many CUP patients face. Substantial limitations were identified with the CPES data, emphasising the need for prospective studies.
探讨未知原发灶癌症（CUP）患者与已知原发灶转移性疾病（非CUP）患者在癌症患者体验调查（CPES）中报告的护理体验差异；从自由文本评论中确定与CUP受访者护理体验相关的见解。
两项独立但相关的研究，涉及对现有数据的二次分析。使用CUP和非CUP患者的频率匹配，对CPES问题的回答进行统计比较。对CUP受访者的自由文本评论进行主题分析。
CPES问卷包括63个封闭式问题，测量与护理体验相关的8个领域，以及3个自由文本问题。问卷被邮寄给2013年9月1日至2013年11月30日期间在英格兰住院的所有成年癌症患者（年龄≥16岁）。
对2992名患者的封闭式回答项目进行匹配分析发现，CUP患者（n = 1496）和非CUP患者（n = 1496）之间存在显著差异：CUP患者更希望获得更多关于其癌症类型和所接受检查的书面信息，更有可能从全科医生（GP）处获得诊断并看过联合健康专业人员，但理解病情解释或接受手术的可能性较小。自由文本回答（n = 3055）被编码为17个类别，提供了关于患者信息以及与全科医生互动的更深入见解。CPES数据可能包括大量具有有利CUP亚型的患者以及最初被确定为CUP但随后确定了原发灶的患者。
这些是首次探索CUP患者护理体验的大规模研究。CUP患者和非CUP患者体验之间的显著差异表明，CUP患者需要更多的心理社会支持和特定干预措施，以应对诊断不确定性以及许多CUP患者面临的多项检查。CPES数据存在重大局限性，强调了前瞻性研究的必要性。
