Lack of knowledge, distress are barriers to active surveillance for thyroid cancer
Click Here to Manage Email Alerts
Key takeaways:
- Adults with low-risk thyroid cancer cited fear of adverse events as a main reason for choosing surgery over active surveillance.
- Those who chose active surveillance had an optimistic perception of their cancer.
Adults with low-risk thyroid cancer cite concerns about adverse outcomes, psychological distress and a negative response to their diagnosis as reasons they opted for surgery over active surveillance, according to study findings.
“This in-depth qualitative study identified the barriers and facilitators to active surveillance, including patient-related, disease-related, and external influencing factors,” Pingting Zhu, PhD, assistant professor, director of the humanistic nursing teaching and research office and director of the international exchange and cooperation office in the School of Nursing and Public Health at Yangzhou University in China, and colleagues wrote in a study published in Thyroid. “These findings reveal that fear of adverse disease outcomes, the negative response to having cancer, lack of recognition of active surveillance, patients’ own psychological problems, and negative emotional reactions are major barriers for low-risk thyroid patients. Furthermore, the advice of medical staff, the support of family members, and the surveillance protocol influenced the decision-making of patients on active surveillance.”
Researchers recruited adults aged 18 years and older who were diagnosed with papillary thyroid cancer or were suspected to have thyroid cancer and had a tumor of 1 cm or less on ultrasound imaging to participate in an interview. All participants had been offered the option of active surveillance or surgery. Interviews were conducted from July to November 2021. Questions were developed using existing literature and consultation with psychologists and experts in thyroid surgery and endocrinology.
Fear of adverse outcomes among reasons for choosing surgery
There were 39 adults who participated in the study, of whom 24 chose to have surgery and 15 chose active surveillance. Of the group that chose surgery, 10 said a lack of comprehensive knowledge about active surveillance guided them to that decision. One of the biggest barriers to active surveillance was concerns about adverse outcomes related to untreated cancer. Twenty-one people in the group viewed surgery as a definitive treatment preventing disease progression. Of the surgery group, 19 said they struggled to make a choice about active surveillance. There were 11 adults in the surgery group who said they had psychological distress and felt negative emotions associated with their thyroid tumor. For 10 adults in the surgery group, active surveillance was perceived as an irresponsible choice for their partners and families.
Of the surgery group, all but one participant said they had a negative response to having cancer, which was a major barrier for active surveillance. Eight participants said they felt that active surveillance would keep them in a disease state and six adults who had surgery were uncomfortable with their thyroid organs. There were five participants who had surgery that said they were willing to accept the adverse events. Six adults said the need for regular follow-up was a reason they decided not to have active surveillance.
Optimism, confidence among reasons for choosing active surveillance
Of the 15 adults who chose active surveillance, seven said they had a good understanding of the approach. Eight adults said they felt optimistic about active surveillance. All but one person in the active surveillance group perceived their diagnosis as a “good cancer” or not as harmful as other cancers, and seven adults said they opted for active surveillance because they did not want to have a functioning organ removed.
Of the active surveillance group, 11 participants said they chose the approach due to residual effects of the surgery. Six adults in the group said the high-quality surveillance systems that are conducive to early detection of disease progression convinced them to choose active surveillance. Ten adults in the group said they chose active surveillance in part due to a recommendation from a professional physician.
“These findings may be used to guide development of future educational and behavioral interventions designed for patients, their families and staff, with the ultimate goal of enhancing the adoption and the implementation of active surveillance in patients who may want it,” the researchers wrote. “Future interventions should aim to improve patients’ knowledge of active surveillance and provide more psychosocial support.”
Perspective
Back to Top
Several consistent themes arose from the interviews of the 24 patients with low-risk papillary thyroid cancer who chose surgery and the 15 who chose active surveillance in this study. The first is that a diagnosis of cancer tends to evoke a tremendous amount of fear and anxiety among patients and their loved ones, and despite the excellent prognosis of low-risk thyroid cancer, these fears contributed strongly to the choice of immediate surgery. Patients who chose active surveillance, on the other hand, were more likely to cite access to reliable information about the surveillance protocol, a realistic (and optimistic) view of their prognosis, and greater physician-patient communication.
Physician preference also appeared to have a strong influence on treatment decisions, and lack of confidence about active surveillance as a long-term management strategy for low-risk thyroid cancer has likely been one of the greatest barriers to this approach. This is understandable considering that, until recently, most patients with thyroid cancer were treated using an aggressive, one-size-fits-all approach consisting of total thyroidectomy and radioactive iodine. Treatment guidelines have shifted over the last two decades, however, providing increasing support for less-intensive options; for example, lobectomy over total thyroidectomy for low-risk cases and active surveillance over surgery for very low-risk cases.
As evidence regarding the safety of long-term active surveillance continues to grow, we may expect a growing level of confidence in this approach and a greater proportion of physicians and patients considering or even favoring active surveillance over immediate surgery.
Collapse
Read more about
Click Here to Manage Email Alerts