"What I Read Didn't Make Sense": How Patients with Thyroid Cancers Are Deciding about Intervention

Program: Abstracts - Orals, Poster Previews, and Posters
Session: SAT 270-310-Thyroid Neoplasia (posters)
Clinical/Translational
Saturday, April 2, 2016: 1:15 PM-3:15 PM
Exhibit/Poster Hall (BCEC)

Poster Board SAT 289
Chase D Hendrickson*1, Gregory S Hanson2 and Louise Davies3
1Dartmouth-Hitchcock Medical Center, Lebanon, NH, 2Dartmouth College, Hanover, NH, 3White River Junction VA Medical Center, White River Junction, VT
Introduction: The rising incidence of papillary thyroid carcinoma is increasingly being recognized as due to overdiagnosis1 (the diagnosis of subclinical disease that will not manifest clinically).2 While the medical literature supports such a conclusion, clinical practice does not reflect this data.3 Patients are discovering this literature and independently embarking on a course of active monitoring instead of immediate surgical intervention.

Objective: To describe the patient experience of questioning treatment options and monitoring a thyroid finding that is a known or suspected carcinoma

Methods: Twenty-one individuals (16 females and five males, ages 21-75) participated in this project. All had independently chosen to delay surgery after having surgery recommended for suspected or diagnosed thyroid carcinoma. Semi-structured phone interviews were transcribed verbatim.  The Grounded Theory approach to coding and analysis was used, given the paucity of data in this area and the lack of an a priori framework or theory. Accuracy of coding was achieved through regular team review, and trustworthiness of conclusions was checked by obtaining feedback from study participants.

Results: Individuals who chose active monitoring for thyroid findings shared remarkably similar experiences and characteristics. As healthcare consumers, many described themselves as wanting to independently check recommendations they received, often because of prior experiences with the healthcare system for their own or a family member’s illness.  As a group, they tended to reject medical advice they perceived as inaccurate or unsubstantiated, a quality that typically preceded their thyroid finding.  Most sought multiple medical opinions (range: 3-10) upon receiving their diagnosis, and these opinions often contradicted one another.  Their interaction with the healthcare system was often characterized by harsh criticism from healthcare providers and an inability to get questions easily answered.  Several were frustrated with the lack of information available about expected outcomes of treatment or monitoring.  Participants typically avoided discussing their diagnosis with friends and/or family to prevent criticism and unwanted advice, and many reported worrying about whether they had made the right decision. Many dealt with their diagnosis by making lifestyle changes – called “watchful working” by one.  Some perceived the diagnosis as a beneficial occurrence.

Conclusion: Patients are finding and acting on the medical literature ahead of guidelines.  They are frustrated by data available on the internet and conflicting recommendations by providers and are burdened by isolation and worry about cancer.  Patients need reliable sources of information about the effects of both surgery and monitoring, and they and their providers should be better supported in the monitoring experience.

1. Davies L, Welch HG. Increasing incidence of thyroid cancer in the United States, 1973-2002. JAMA 2006;295(18):2164-7. 2. Welch HG, Black WC. Overdiagnosis in cancer. J Natl Cancer Inst 2010;102(9):605-13. 3. Haugen BRM, Alexander EK, Bible KC, et al. 2015 American Thyroid Association Management Guidelines for Adult Patients with Thyroid Nodules and Differentiated Thyroid Cancer. Thyroid 2015.

Nothing to Disclose: CDH, GSH, LD

*Please take note of The Endocrine Society's News Embargo Policy at https://www.endocrine.org/news-room/endo-annual-meeting/pr-resources-for-endo

Sources of Research Support: Mellon Foundation Grant via the Leslie Center for the Humanities at Dartmouth College