Session: SAT 270-310-Thyroid Neoplasia (posters)
Poster Board SAT 289
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.
Nothing to Disclose: CDH, GSH, LD
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