Davies Louise, Hendrickson Chase D, Hanson Gregory S
VA Outcomes Group, Department of Veterans Affairs Medical Center, White River Junction, Vermont2Section of Otolaryngology, Geisel School of Medicine, Dartmouth College, Hanover, New Hampshire3The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, New Hampshire.
The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, New Hampshire4Section of Endocrinology, Diabetes, and Metabolism, Department of Medicine, Dartmouth Hitchcock Medical Center, Lebanon, New Hampshire.
JAMA Otolaryngol Head Neck Surg. 2017 Jul 1;143(7):663-669. doi: 10.1001/jamaoto.2016.4749.
Overdiagnosis of cancer-the identification of cancers that are unlikely to progress-is a source of discomfort and challenge for patients, physicians, and health care systems. A major cause of this discomfort is the inability to know prospectively with certainty which cancers are overdiagnosed. In thyroid cancer, as patients have begun to understand this concept, some individuals are independently deciding not to intervene, despite this practice not yet being widely accepted.
To describe the current experience of people who independently self-identify as having an overdiagnosed cancer and elect not to intervene.
DESIGN, SETTING, AND PARTICIPANTS: In this qualitative study, semistructured interviews were conducted between July 1 and December 31, 2015, with 22 community-dwelling adults aged 21 to 75 years who had an incidentally identified thyroid finding that was known or suspected to be malignant and who questioned the intervention recommended by their physicians. Verbatim transcripts were analyzed using constant comparative analysis.
The experience of individuals who self-identify as having an overdiagnosed cancer and elect not to intervene.
Of the 22 people interviewed (16 females and 6 males; mean age, 48.5 years), 18 had elected not to intervene on their thyroid finding and had been living with the decision for a mean of 39 months (median, 40 months; range, 1-88 months). Twelve of the 18 participants reported that they experienced significant anxiety about cancer progression, but had considered reasons for choosing nonintervention: understanding issues of precision in diagnostic testing and the varied behavior of cancer, surgical risks, medication use, and low risk of death from the cancer. Twelve participants described their decisions as met with nonreassuring, unsupportive responses. Medical professionals, friends, and internet discussion groups told them they were "being stupid," "were wrong," or were "crazy" to not intervene. Although 14 individuals said they wished to connect with others about their experiences, only 3 reported success in doing so. Fifteen participants reported that they managed their overall experience through secret keeping. By the time of this study, 5 of the 18 individuals had discontinued surveillance, the recommended alternative to intervention. Despite this, only 7 participants "wished they did not know" about their thyroid finding.
Isolation and anxiety characterize the current experience of patients with thyroid cancer who are living with the decision to not intervene. These patients are at risk of disengaging from health care. Successful de-escalation of intervention for patients who self-identify as having overdiagnosed cancers requires explicit social and health system support and education. We hypothesize that improved support would also promote quality of care by increasing the likelihood that patients could be kept engaged for recommended surveillance.
癌症的过度诊断——即识别出那些不太可能进展的癌症——给患者、医生和医疗保健系统带来了不适和挑战。这种不适的一个主要原因是无法前瞻性地确定哪些癌症是过度诊断的。在甲状腺癌中，随着患者开始理解这一概念，一些人自行决定不进行干预，尽管这种做法尚未被广泛接受。
描述那些自行认定患有过度诊断癌症并选择不进行干预的人的当前经历。
设计、背景和参与者：在这项定性研究中，于2015年7月1日至12月31日期间对22名年龄在21至75岁之间的社区居住成年人进行了半结构化访谈，这些人偶然发现甲状腺有已知或疑似恶性的病变，并且对医生建议的干预措施提出了质疑。使用持续比较分析法对逐字记录进行了分析。
自行认定患有过度诊断癌症并选择不进行干预的个人的经历。
在接受访谈的22人中（16名女性和6名男性；平均年龄48.5岁），18人选择不对甲状腺病变进行干预，并且这一决定已经维持了平均39个月（中位数为40个月；范围为1至88个月）。18名参与者中有12人报告称他们对癌症进展感到极度焦虑，但他们考虑了选择不干预的原因：理解诊断测试的精准度问题以及癌症的不同行为、手术风险、药物使用情况以及癌症导致死亡的低风险。12名参与者表示，他们的决定得到的是令人不安、缺乏支持的回应。医学专业人员、朋友和网络讨论组告诉他们，不进行干预是“愚蠢的”、“错误的”或“疯狂的”。尽管14个人表示他们希望就自己的经历与他人交流，但只有3人报告成功做到了这一点。15名参与者报告称，他们通过保守秘密来应对自己的整体经历。在这项研究进行时，18名个体中有5人已经停止了监测，而监测是推荐的干预替代方案。尽管如此，只有7名参与者“希望自己不知道”甲状腺的检查结果。
孤立和焦虑是目前那些决定不进行干预的甲状腺癌患者经历的特征。这些患者有脱离医疗保健的风险。对于自行认定患有过度诊断癌症的患者，要成功降低干预强度，需要明确的社会和卫生系统支持与教育。我们推测，改善支持也将通过增加患者接受推荐监测的可能性来提高医疗质量。
