Patient Experience of Thyroid Cancer Active Surveillance in Japan.

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.