Experience of US Patients Who Self-identify as Having an Overdiagnosed Thyroid Cancer: A Qualitative Analysis

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Abstract

Importance

Overdiagnosis of cancer—the identification of cancers that are unlikely to progress—is a source of discomfort and challenge for patients, physicians, and health care systems. A major cause of this discomfort is the inability to know prospectively with certainty which cancers are overdiagnosed. In thyroid cancer, as patients have begun to understand this concept, some individuals are independently deciding not to intervene, despite this practice not yet being widely accepted.

Objective

To describe the current experience of people who independently self-identify as having an overdiagnosed cancer and elect not to intervene.

Design, Setting, and Participants

In this qualitative study, semistructured interviews were conducted between July 1 and December 31, 2015, with 22 community-dwelling adults aged 21 to 75 years who had an incidentally identified thyroid finding that was known or suspected to be malignant and who questioned the intervention recommended by their physicians. Verbatim transcripts were analyzed using constant comparative analysis.

Main Outcomes and Measures

The experience of individuals who self-identify as having an overdiagnosed cancer and elect not to intervene.

Results

Of the 22 people interviewed (16 females and 6 males; mean age, 48.5 years), 18 had elected not to intervene on their thyroid finding and had been living with the decision for a mean of 39 months (median, 40 months; range, 1-88 months). Twelve of the 18 participants reported that they experienced significant anxiety about cancer progression, but had considered reasons for choosing nonintervention: understanding issues of precision in diagnostic testing and the varied behavior of cancer, surgical risks, medication use, and low risk of death from the cancer. Twelve participants described their decisions as met with nonreassuring, unsupportive responses. Medical professionals, friends, and internet discussion groups told them they were “being stupid,” “were wrong,” or were “crazy” to not intervene. Although 14 individuals said they wished to connect with others about their experiences, only 3 reported success in doing so. Fifteen participants reported that they managed their overall experience through secret keeping. By the time of this study, 5 of the 18 individuals had discontinued surveillance, the recommended alternative to intervention. Despite this, only 7 participants “wished they did not know” about their thyroid finding.

Conclusions and Relevance

Isolation and anxiety characterize the current experience of patients with thyroid cancer who are living with the decision to not intervene. These patients are at risk of disengaging from health care. Successful de-escalation of intervention for patients who self-identify as having overdiagnosed cancers requires explicit social and health system support and education. We hypothesize that improved support would also promote quality of care by increasing the likelihood that patients could be kept engaged for recommended surveillance.

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