Wolyniec Kamil, O'Callaghan Clare, Fisher Krista, Jessica Sharp, Tothill Richard W, Bowtell David, Linda Mileshkin, Schofield Penelope
Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia.
Department of Psychological Sciences, Swinburne University of Technology, Melbourne, Victoria, Australia.
Psychooncology. 2023 Apr;32(4):589-596. doi: 10.1002/pon.6104. Epub 2023 Feb 13.
Patients with Cancer of Unknown Primary (CUP) commonly report poor understanding of their illness and high levels of psychological distress. Despite the potential benefits to CUP patients, there is a paucity of research exploring the reasons behind poor understanding of a CUP diagnosis. The aim of this study was to understand patients' experiences of communication with doctors, their understanding of diagnosis and the role of genomic testing, as well as their information needs.
Semi-structured interviews explored CUP patients' perceptions of communication with their doctors, understanding of their illness, and their needs regarding medical information. Qualitative inductive thematic analysis of transcribed audio-recordings was employed.
SETTING/PARTICIPANTS: Nineteen patients were recruited from within a prospective cohort study involving routine genomic testing of CUP patients.
CUP patients had varied perceptions of communication with doctors as well as different levels of need, readiness, and capacity for information. Some patients felt well understood and supported by their doctors while others did not. Many patients reported feeling overwhelmed and shocked when receiving their cancer diagnosis and emphasized the importance of family support in receiving and understanding medical information. While patients understood the implications of genomic testing for treatment and diagnosis, few had a detailed understanding of genomic testing.
Patients' experience of communication and understanding of CUP could be potentially improved by clinicians' assessment of the communication style preferred by each patient and their family and the development of online resources to meet their evolving information needs.
不明原发癌（CUP）患者普遍表示对自身病情了解不足且心理困扰程度高。尽管对CUP患者可能有益，但探索对CUP诊断理解不足背后原因的研究却很匮乏。本研究的目的是了解患者与医生沟通的经历、对诊断的理解以及基因检测的作用，还有他们的信息需求。
采用半结构式访谈来探究CUP患者对与医生沟通的看法、对自身病情的理解以及对医疗信息的需求。对转录的音频记录进行定性归纳主题分析。
背景/参与者：从一项涉及CUP患者常规基因检测的前瞻性队列研究中招募了19名患者。
CUP患者对与医生沟通的看法各异，对信息的需求、准备程度和能力也不同。一些患者觉得医生很理解并支持他们，而另一些患者则不然。许多患者报告在得知癌症诊断时感到不知所措和震惊，并强调家庭支持在接收和理解医疗信息方面的重要性。虽然患者理解基因检测对治疗和诊断的影响，但很少有人对基因检测有详细的了解。
临床医生评估每位患者及其家属偏好的沟通方式，并开发在线资源以满足他们不断变化的信息需求，可能会改善患者对CUP的沟通体验和理解。
