Many thyroid cancer survivors reported that they were inadequately prepared, according to results of a study published in JAMA Otolaryngology-Head & Neck Surgery.
The patient experience from pretreatment to long-term outcomes for thyroid cancer is poorly understood. This survey of patient experiences was conducted by NorthShore University HealthSystem in the United States between 2019 and 2020. Anonymous thyroid cancer survivors (1412 participants) responded to a 55-question survey about their experience and perspectives.
The study participants were 88.4% women, median age 48 years at diagnosis, and 60 years at survey completion.
Most (99.0%) underwent thyroid cancer surgery and all but 18.2% received radioactive iodine (RAI) treatment.
One-third of survivors (37.2%) responded to the question about not fully understanding their treatment plan. These responders indicated they were not well-informed about postoperative surveillance, did not understand treatment effects, were unclear about timing of RAI or surgery, and some described a lack of healthcare team coordination.
Two-thirds of survivors (67.6%) responded to the question about what information they were missing. They wished they had been informed about life changes without a thyroid, feelings of fatigue related to treatment, how removing a thyroid can change your appearance, and that they would need to establish a new normal.
A substantial proportion (40.9%) responded to the question about treatment not meeting their expectations. Those with unmet expectations wished they had paid more attention to their well-being, that they had delayed treatment, or had found good practitioners or teams.
Patients who reported treatment meeting their expectations were more likely to have had a full understanding, no complications, were men, and did not experience late effects.
This study found evidence that many survivors of thyroid cancer were ill-informed and/or unprepared about treatment and life after thyroid cancer, highlighting an unmet need for better patient education.
Disclosure: Some authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of disclosures.
Karcioglu AS, Dhillon VK, Davies L, et al. Analysis of unmet information needs among patients with thyroid cancer. JAMA Otolaryngol Head Neck Surg. 2023;149(2):110-119. doi:10.1001/jamaoto.2022.4108