McWilliams Lorna, Farrell Carole, Keady John, Swarbrick Caroline, Burgess Lorraine, Grande Gunn, Bellhouse Sarah, Yorke Janelle
Christie Patient Centred Research, School of Oncology, The Christie NHS Foundation Trust, Manchester, UK.
Division of Nursing, Midwifery and Social Work, School of Health Sciences, University of Manchester, Manchester, UK.
BMJ Open. 2018 Apr 12;8(4):e020250. doi: 10.1136/bmjopen-2017-020250.
Little is known about the cancer experience and support needs of people with dementia. In particular, no evidence currently exists to demonstrate the likely complex decision-making processes for this patient group and the oncology healthcare professionals (HCP) involved in their care. The aim of this study was to explore the cancer-related information needs and decision-making experiences of patients with cancer and comorbid dementia, their informal caregivers and oncology HCPs.
Cross-sectional qualitative study. Semistructured interviews were conducted face to face with participants. Interviews were audio recorded and transcribed prior to thematic analysis.
Patients with a diagnosis of cancer and dementia, their informal caregivers and oncology HCPs involved in their care, all recruited from a regional treatment cancer centre.
Purposeful sample of 10 patients with a diagnosis of cancer-dementia, informal caregivers (n=9) and oncology HCPs (n=12).
Four themes were identified: (1) leading to the initial consultation-HCPs require more detailed information on the functional impact of dementia and how it may influence cancer treatment options prior to meeting the patient; (2) communicating clinically relevant information-informal caregivers are relied on to provide patient information, advocate for the patient and support decision-making; (3) adjustments to cancer care-patients with dementia get through treatment with the help of their family and (4) following completion of cancer treatment-there are continuing information needs. Oncology HCPs discussed their need to consult specialists in dementia care to support treatment decision-making.
Although patients with cancer-dementia are involved in their treatment decision-making, informal caregivers are generally crucial in supporting this process. Individual patient needs and circumstances related to their cancer must be considered in the context of dementia prognosis highlighting complexities of decision-making in this population. Oncology teams should strive to involve healthcare staff with dementia expertise as early as possible in the cancer pathway.
关于痴呆症患者的癌症经历和支持需求，人们了解甚少。特别是，目前尚无证据表明该患者群体以及参与其护理的肿瘤医疗保健专业人员（HCP）可能面临的复杂决策过程。本研究的目的是探讨患有癌症合并痴呆症的患者、其非正式护理人员以及肿瘤HCP与癌症相关的信息需求和决策经历。
横断面定性研究。与参与者进行面对面的半结构化访谈。访谈进行录音，并在进行主题分析之前进行转录。
从一个地区性癌症治疗中心招募了被诊断患有癌症和痴呆症的患者、其非正式护理人员以及参与其护理的肿瘤HCP。
有目的地抽取了10名被诊断患有癌症 - 痴呆症的患者、非正式护理人员（n = 9）和肿瘤HCP（n = 12）。
确定了四个主题：（1）导致初次咨询——HCP在与患者会面之前，需要更多关于痴呆症功能影响及其如何影响癌症治疗选择的详细信息；（2）传达临床相关信息——依靠非正式护理人员提供患者信息、为患者代言并支持决策；（3）调整癌症护理——痴呆症患者在家人的帮助下完成治疗；（4）癌症治疗完成后——仍有持续的信息需求。肿瘤HCP讨论了他们需要咨询痴呆症护理专家以支持治疗决策。
尽管患有癌症 - 痴呆症的患者参与其治疗决策，但非正式护理人员通常在支持这一过程中至关重要。在痴呆症预后的背景下，必须考虑与癌症相关的个体患者需求和情况，这凸显了该人群决策的复杂性。肿瘤团队应努力尽早让具有痴呆症专业知识的医护人员参与癌症治疗流程。
