Patient Experience of Thyroid Cancer Active Surveillance in Japan
Patient Experience of Thyroid Cancer Active Surveillance in Japan
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DOI：
10.1001/jamaoto.2018.4131
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发表时间：
2019-04-01
影响因子：
7.8
通讯作者：
Miyauchi, Akira
中科院分区：
文献类型：
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作者：
Davies, Louise;Roman, Benjamin R.;Miyauchi, Akira
重要性对于接受手术治疗的甲状腺癌患者来说，无论是否使用放射性碘，担心的负担都是巨大的。对于接受主动监测的患者，这一方面的患者体验到目前为止还没有被描述，可能成为更广泛地接受监测作为癌症管理策略的潜在障碍。目的描述历史最长、规模最大的甲状腺癌主动监测项目中患者的体验。设计、背景和参与者本研究采用调查、半结构访谈和现场观察的混合方法，在日本神户的Kuma医院进行。调查于2017年9月4日至10月18日进行，实地观察于2017年8月28日至10月20日进行。调查参与者是249名到医院进行监测访问的积极监测下的患者的连续样本，半结构化受访者是21名患者的子集。英语调查工具由以日语为母语的人翻译，回译成英语，然后由一个具有健康研究专业知识的日语专家小组进一步完善。主要结果和措施调查和访谈回复以及实地观察。结果总共有249份调查问卷分发给积极监测的甲状腺癌患者。243名患者(97.6%)完成了调查。在受访者中，195名(80.2%)是女性，20名(8.2%)是男性(28名[11.5%]回答缺失)。参加半结构式访谈的21例患者中，男性3例(14.3%)，平均年龄(范围)(32~85岁)。37%的人认为癌症担忧的频率有时或更多。32%的人表示，他们的担忧在一定程度上或很大程度上影响了他们的情绪。14%的人表示，他们的担忧在一定程度上或很大程度上影响了他们进行日常活动的能力。癌症扩散，后来需要手术干预，以及难以解释癌症大致位置的身体经历，这些都是令人担忧的主要原因。大多数受访者(60.0%)表示，与他们第一次发现癌症时相比，他们的担忧有所减少。到确诊后3年，报告他们完全不担心的参与者的比例从14%(95%可信区间，12%-16%)增加到25%(95%可信区间，23%-26%)。80%(95%CI，79%-81%)的受访者同意或强烈同意他们进行主动监测的决定与他们的个人价值观相匹配，83%(95%CI，82%-84%)的受访者同意或强烈同意选择主动监测对他们个人来说是最好的决定。大多数患者(77%)在被提供选择之前没有听说过主动监测。结论和相关性癌症担忧在主动监测的甲状腺癌患者中很常见，这与积极治疗的患者的担忧相当。接受积极监测的患者报告的癌症担忧水平随着时间的推移而下降，患者对他们的疾病管理决定表示满意。这些发现表明，不应将癌症担忧的可能性视为阻止对甲状腺癌进行成功的主动监测。
IMPORTANCE The burden of concern for patients with thyroid cancer who undergo surgical intervention with or without radioactive iodine is known to be substantial. For patients under active surveillance, this aspect of the patient experience has not been described to date and could be a potential barrier to broader acceptance of surveillance as a cancer management strategy.OBJECTIVE To describe the experiences of patients in the longest-standing and largest thyroid cancer active surveillance program.DESIGN, SETTING, AND PARTICIPANTS This study used a mixed method of survey, semistructured interviews, and field observation and was conducted at Kuma Hospital in Kobe, Japan. The survey was administered from September 4, 2017, through October 18, 2017, and the field observation was conducted from August 28, 2017, to October 20, 2017. Survey participants were a consecutive sample of 249 patients under active surveillance who were attending the hospital for a surveillance visit, and the semistructured interviewees were a subset of 21 patients. The English-language survey instrument was translated by native Japanese speakers, back-translated into English, and then further refined by a panel of Japanese speakers with expertise in health research.MAIN OUTCOMES AND MEASURES Survey and interview responses and field observations.RESULTS In total, 249 surveys were distributed to patients with thyroid cancer on active surveillance. Two hundred forty-three patients (97.6%) completed the survey. Among the respondents, 195 (80.2%) were female and 20 (8.2%) were male (28 [11.5%] responses were missing). Among the subset of 21 patients who participated in the semistructured interview, 3 were male (14.3%), and the mean (range) age was 64 (32-85) years. Thirty-seven percent rated the frequency of cancer worry as occurring sometimes or more. Thirty-two percent said their worry affected their mood somewhat or a lot. Fourteen percent reported that their worry affected their ability to carry out daily activities somewhat or a lot. Cancer spread, later need for surgical intervention, and difficulty with interpreting bodily experiences in the general location of the cancer were among the main sources of worry. Most respondents (60.0%) said their worry was less than it was when they first found out about their cancer. By 3 years after diagnosis, the proportion of participants who reported they were not at all worried increased from 14%(95% CI, 12%-16%) to 25%(95% CI, 23%-26%). Eighty percent (95% CI, 79%-81%) of respondents agreed or strongly agreed that their decision to do active surveillance matched their personal values, and 83%(95% CI, 82%-84%) agreed or strongly agreed that choosing active surveillance was the best decision for them personally. Most patients (77%) had not heard of active surveillance before they were offered the option.CONCLUSIONS AND RELEVANCE Cancer concern was common among patients with thyroid cancer under active surveillance, which is comparable to the worry among actively treated patients. Levels of cancer worry reported by patients under active surveillance decreased over time, and patients expressed satisfaction with their disease management decision. These findings suggest that the possibility of cancer worry should not be viewed as prohibitive to successful active surveillance in thyroid cancer.