Integrative Medicine Program, Unit 145, The University of Texas M. D. Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX 77030, USA.
Support Care Cancer. 2011 Aug;19(8):1125-32. doi: 10.1007/s00520-010-0918-6. Epub 2010 May 29.
The "exceptional patients" with cancer are survivors who had advanced cancer considered incurable by medical report and who subsequently became disease-free or experienced unexplained survival time given the nature of their disease or treatment. This experience is a puzzling phenomenon that has not been formally investigated in a cancer population. The purpose of this study was to understand exceptional patients' accounts of their experience.
This study used a narrative approach with a cross-case thematic analysis. Recruitment took place at health care centers in the USA and Israel. Oncologists in both centers were asked to identify patients who had an exceptional disease course. Patients were then contacted and interviewed; an audio recording was made of each narrative account and then transcribed. Interviews and thematic analyses were conducted independently at each site. These thematic findings from each site were discussed with both research teams and a common underlying theme was identified, which is the focus of this report.
Twenty-six participants were interviewed: 14 from the USA and 12 from Israel. All the participants have had advanced disease with a range of diagnoses that included breast, colorectal, pancreatic, ovarian cancer, glioblastoma multiforme, and others. The main recurrent theme from both the US and Israeli sites was personal activism. This was manifested in taking charge and getting involved in the process of diagnosis and treatment, as well as becoming more altruistic in their relationships with others. In many cases, this was reflected in a change in a philosophy about life.
In this study, we found that activism was a major theme that was independently observed in both Israel and the U.S.A. This has implications for health care providers to facilitate patient engagement in the care and treatment of their disease. Further research on this phenomenon is needed.
“特殊患者”是指那些被医疗报告认为患有晚期癌症且无法治愈，但随后无癌生存或出现无法解释的生存时间的幸存者，这一经历是一个令人费解的现象，尚未在癌症患者群体中得到正式研究。本研究旨在了解特殊患者对其经历的描述。
本研究采用叙事方法和跨案例主题分析。在美国和以色列的医疗中心进行了招募。这两个中心的肿瘤医生被要求识别具有特殊疾病过程的患者。然后联系患者并进行访谈；对每个叙述性陈述进行音频录制并转录。访谈和主题分析在每个地点独立进行。这些来自每个地点的主题发现与两个研究团队进行了讨论，并确定了一个共同的潜在主题，这是本报告的重点。
共采访了 26 名参与者：美国 14 名，以色列 12 名。所有参与者均患有晚期疾病，诊断包括乳腺癌、结直肠癌、胰腺癌、卵巢癌、胶质母细胞瘤等。来自美国和以色列的主要反复出现的主题是个人能动性。这表现为负责并参与诊断和治疗过程，以及与他人的关系更加利他。在许多情况下，这反映在对生活的哲学观念的改变上。
在本研究中，我们发现能动性是一个主要主题，在美国和以色列都得到了独立观察。这对医疗保健提供者提出了促进患者参与其疾病护理和治疗的要求。需要对这一现象进行进一步研究。
