Hear the Patient's Voice Regarding Implementation of Thyroid Cancer Active Surveillance in China

The most current national cancer statistics in China estimated 202,600 new thyroid cancer cases (incidence 13.37/10⁵ persons) and 8300 deaths in 2016. ¹ The annual percentage increase in thyroid cancer incidence of was 17.7% in women between 2000 and 2016. Although a genuine increase in incidence may exist, a predominant contributor to this phenomenon is increased detection of small low-risk papillary thyroid cancer (PTC), which may have been overdiagnosed. ²

In view of limited benefit from excessive examination and surgery for low-risk PTC, Japanese investigators pioneered the approach of active surveillance (AS) instead of immediate surgery for select micro-PTC. ³ This approach was later adopted in several other countries. ⁴ Emerging evidence supports AS to be a safe alternative strategy to surgery, offering relatively equivalent survival but significantly reduced morbidity among patients with subcentimeter low-risk PTC. ⁵

However, the path in implementing AS practice among Chinese patients has been rocky, despite knowledge of several large cohort studies of AS conducted in East Asians. In support of AS, the 2016 Chinese medical expert consensus recommended AS for select low-risk micro-PTC as one management option. ⁶ In 2021, there were two single-center retrospective studies of AS published in Chinese cohorts. ^7,8 The authors of both studies concluded that AS would be an achievable and effective alternative strategy for management of low-risk micro-PTC in China. ^7,8 But in practice for the past decade, subcentimeter PTC has still accounted for more than half of all thyroid cancer surgeries in China.

This knowledge begs the following questions: What are the barriers and facilitators to implement AS in the era of the epidemic of small low-risk PTC in China? Are the barriers and facilitators nation specific? How may practitioners increase the acceptability of AS among eligible patients?

In this issue of Thyroid, a qualitative survey conducted by Zhu et al. ⁹ dives into the patients' perspective on thyroid cancer AS and may provide insight to the aforementioned questions. The authors enrolled patients with subcentimeter low-risk PTC from four tertiary care centers in Jiangsu Province, China. All of the 39 participants were offered the options of AS or immediate surgery—15 of whom chose AS and the remainder underwent surgery.

Participants were interviewed and asked five open-ended questions to identify the barriers and facilitators to choosing AS. The influencing factors were classified as patient-related, disease-related, and external factors. Based on inductive content analysis, major barriers for AS included negative emotions related to having thyroid cancer, fear of disease progression in absence of definitive treatment, psychological struggles, and a lack of comprehensive understanding about AS. The patients who chose AS were more likely to consider thyroid cancer as a “good cancer” and have an optimistic attitude toward thyroid cancer. External influencing factors influencing decision-making included recommendations from medical staff, attitudes to the potential residual effects of surgery, and the AS protocol. ⁹

This is the first qualitative study conducted in Chinese patients with low-risk PTC, and is informative in helping to identify factors that may influence patients' disease management choices. Along with previous quantitative and qualitative studies on the adoption of thyroid cancer AS in western countries, ^{10 –12} these studies highlight the complexity in the decision-making process and the important role of human nature in implementing AS into practice.

The barriers related to perceptions about cancer and psychological distress appear to have similarities across nations and cultures. The findings and conclusions of this study are similar to those of other studies conducted on patient perspective. ^11,12 To patients, low-risk is not “no-risk,” and “the C-word” terminology is still used to describe low-risk PTC. Thus, patients may need more time for transition from the traditional belief that cancer should be eliminated to the new mindset of living with it. In addition to psychological support and counseling for patients, more evidence on the long-term safety of AS is needed.

Enhancing informational support for patients is another facilitator for acceptance of AS in appropriately selected patients. Ideally, information provided should be comprehensive, up-to-date, evidence-based, easy to digest, and of interest to patients. Successful practice in Japan suggests information may include the following: (a) the definition, incidence rate, and natural history of low-risk PTC; (b) the pros and cons of surgical and nonsurgical options; (c) the details of the AS follow-up protocol; and (d) the experience and lessons from the available evidence about AS.

A recent investigation by Karcioglu et al. ¹³ emphasized the importance of assessing patient's unmet information needs that could be underappreciated by professionals. Effective information support requires extensive professional knowledge, good communication skills, and adequate consultation time. The latter is challenging especially to clinicians working at high-volume hospitals such as most tertiary care centers in China. Thus, development of multidisciplinary teams, conversation aids, or effective media strategies is necessary.

Clinicians of different disciplines have different standpoints on AS despite consensus recommendations. For example, data from the MAeSTro study from South Korea suggested a much higher acceptance rate of AS in patients who were recruited by endocrinologists than those recruited by surgeons. ^14,15 This study also indicated that the patient's adoption of AS was influenced by recommendations from medical professionals. Inconsistencies in advice among practitioners may be confusing for patients, and increase the challenges faced by patients in decision-making. Optimization of patient-centered decision-making process could be mediated by up-to-date education targeted at practitioners.

The findings in this study may not represent perceptions of the broader Chinese population as it was conducted in a region with the nation's second-highest total gross domestic product and a high degree of social infrastructure. It also provided little evidence that patients were aware of the possibility of overdiagnosis and overtreatment of low-risk PTC before study enrollment, on which the AS strategy was founded. Nonetheless, we hope this study will inspire all those who seek better care for patients with low-risk PTC to understand challenges and opportunities of offering AS for those who may desire it. Moreover, this study may inspire medical professionals in China to work more closely with our patients, bridge any information gap with our patients, and support their involvement in medical decision-making.