Henshall Catherine, Davey Zoe, Walthall Helen, Ball Hannah, Shahidi Mitra, Park John, Rahman Najib
Faculty of Health and Life Sciences, Oxford Brookes University, Oxford, UK
Faculty of Health and Life Sciences, Oxford Brookes University, Oxford, UK.
BMJ Open. 2021 Jan 31;11(1):e040679. doi: 10.1136/bmjopen-2020-040679.
The study aim was to explore experiences of patients with pleural mesothelioma of follow-up care in three National Health Service (NHS) Trusts to develop recommendations for practice.
The study design was qualitative and comprised three interlinked phases: a documentary analysis, interviews and consultation meetings. Altheide and Johnson's Analytic Realism theoretical framework guided the thematic data analysis process.
The study was conducted in three NHS Trusts in South England. Two were secondary care settings and the third was a tertiary centre.
The secondary care trusts saw 15-20 patients with new mesothelioma per year and the tertiary centre 30-40. The tertiary centre had a designated mesothelioma team. Twenty-one patients met the inclusion criteria: >18 years, mesothelioma diagnosis and in follow-up care. Non-English speaking participants, those unable to provide written informed consent or those whom the clinical team felt would find participation too distressing were excluded. All participants were white, 71% were 70-79 years old and 71% were men. Three consultation meetings were conducted with key stakeholders including mesothelioma nurse specialists, patients with mesothelioma, carers and local clinical commissioning group members.
Specific outcomes were to gain a detailed understanding of mesothelioma follow-up care pathways and processes and to develop coproduced recommendations for practice.
Mesothelioma pathways were not always distinct from lung cancer care pathways. All trusts provided follow-up information and resources but there was varied information on how to access local support groups, research or clinical trial participation. Five themes were developed relating to people; processes; places; purpose and perception of care. Coproduced recommendations for improving mesothelioma follow-up pathways were developed following the consultation meetings.
This study has developed recommendations which identify the need for patients with pleural mesothelioma to access consistent, specialist, streamlined mesothelioma care, centred around specialist mesothelioma nurses and respiratory consultants, with input from the wider multidisciplinary team.
本研究旨在探讨在三个国民保健服务(NHS)信托机构中,胸膜间皮瘤患者的后续护理体验,以便为实践制定建议。
本研究设计为定性研究,包括三个相互关联的阶段:文献分析、访谈和咨询会议。阿尔泰德和约翰逊的分析实在论理论框架指导了主题数据分析过程。
本研究在英格兰南部的三个NHS信托机构中进行。其中两个是二级医疗机构,第三个是三级中心。
二级医疗机构信托机构每年接诊15 - 20例新确诊的间皮瘤患者,三级中心为30 - 40例。三级中心有一个指定的间皮瘤团队。21名患者符合纳入标准:年龄大于18岁、确诊为间皮瘤且处于后续护理阶段。不会说英语的参与者、无法提供书面知情同意书的参与者或临床团队认为参与研究会过于痛苦的参与者被排除在外。所有参与者均为白人,71%的人年龄在70 - 79岁之间,71%为男性。与关键利益相关者进行了三次咨询会议,包括间皮瘤专科护士、间皮瘤患者、护理人员和当地临床委托小组的成员。
具体成果是详细了解间皮瘤后续护理途径和流程,并制定共同产生的实践建议。
间皮瘤护理途径并不总是与肺癌护理途径不同。所有信托机构都提供后续护理信息和资源,但关于如何加入当地支持小组、参与研究或临床试验的信息各不相同。围绕人员、流程、地点、目的和护理认知形成了五个主题。咨询会议后制定了共同产生的改善间皮瘤后续护理途径的建议。
本研究提出了一些建议,这些建议指出胸膜间皮瘤患者需要获得一致、专业、简化的间皮瘤护理,以专科间皮瘤护士和呼吸科顾问为核心,并得到更广泛的多学科团队的支持。