Patients Who Refuse Intervention for Thyroid Cancer at Risk of Disengaging From Care

A study evaluating patients diagnosed with thyroid cancer who refused a clinical intervention for fear of being overdiagnosed has reported that the individuals feel isolated and anxious. Additionally, they are at a risk of disengaging from healthcare.

Cancer overdiagnosis has been a global concern among health services researchers. Improved diagnostic tools, increased patient awareness, and a greater emphasis on medical surveillance have together contributed to this phenomenon. Nearly 60% of thyroid cancers in developed nations were diagnosed because the population had access to better tools, which raises questions around increased regulation and consideration for watchful waiting, rather than treatment.

However, according to the current study published in JAMA Otolaryngology-Head and Neck Surgery, interviews with individuals who self-identified as being overdiagnosed and refused treatment identified feelings of anxiety and isolation. The study authors interviewed 22 individuals (range, 21-75 years), primarily female, who had been diagnosed with thyroid cancer—18 of them had refused an intervention and had been living with the decision for a median time of 39 months (range, 1-88 months).

Twelve of the 18 participants reported significant anxiety regarding their cancer progression, but explained that their decision was based on:

• Understanding issues of precision in diagnostic testing and the varied behavior of cancer
• Surgical risks
• Medication use
• Low risk of death from the cancer

Twelve of them also reported absence of support from medical professionals, friends, and social media groups, including suggestions that they had made the wrong decision. Only 3 of the 18 said they had successfully connected with others about their experience, while 15 individuals had kept their diagnosis a secret. Five participants had disengaged themselves from medical surveillance, which is the recommended alternative to an active intervention for patients diagnosed with thyroid cancer.

The authors express concern that individuals diagnosed with thyroid cancer who choose nonintervention are at risk of disengaging from healthcare. They recommend lending social and health system support and education for this population to keep them engaged with their surveillance and ultimately, to promote quality healthcare.

“Culturally we are conditioned to think that if you’re diagnosed with cancer, you have to do everything you can to rid your body of that cancer. Changing attitudes toward non-intervention is likely to require a change in our larger social and media culture,” senior author Louise Davies, MD, MS, associate professor at The Dartmouth Institute and Chief of Otolaryngology at Veterans Administration in White River Junction, Vermont, said in a statement.

Reference

Davies L, Hendrickson CD, Hanson GS. Experience of US patients who self-identify as having an overdiagnosed thyroid cancer: a qualitative analysis [published online March 9, 2017]. JAMA Otolaryngol Head Neck Surg. doi: 10.1001/jamaoto.2016.4749.