Background
The number of people diagnosed with thyroid cancer has increased by more than two-and-half times (175%) in the UK since the early 1990s1. The surge of differentiated thyroid cancer (DTC) is suggested to be at least partly due to overdiagnosis2, as advances in imaging and increased scrutiny have allowed more small or early low-risk cancers to be detected.
There are various strategies for managing low-risk DTCs. The traditional treatment is total thyroidectomy (removal of the thyroid gland), which offers an excellent overall survival rate and a low recurrence rate. However, this survival benefit comes at the price of life-long hormone replacement therapy and increased risk of post-operative complications such as vocal cord paralysis and hypoparathyroidism.
Hemithyroidectomy (partial removal of the thyroid gland) has been endorsed as an alternative treatment approach to total thyroidectomy for DTC by multiple international guidelines.3,4 However, it carries a higher cancer recurrence rate when compared with total thyroidectomy.
Shared Decision Making (SDM) involves intentional and cooperative communication between the patient and their doctor. Knowledge, values, and preferences are shared, and a discussion process leads to a treatment decision.5 However, it can be challenging to achieve in standard clinical encounters. A systematic review of the decision-making process in thyroid cancer management showed that many clinicians found SDM difficult, as they struggled to find the right questions to ask patients about their preferences and values.6
A patient concerns inventory (PCI) is a condition-specific prompt list that allows patients to create a personalised record of their concerns, needs, and priorities, which can be used as a structure to guide outpatient consultations.7 Earlier this year, the HANSOM study team developed a thyroid cancer-specific patient concerns inventory (PCI-TC) (see appendix) to empower patients to raise concerns during the SDM process for their cancer treatment. It was created based on a literature review of the unmet needs of thyroid cancer patients followed by a multidisciplinary modified Delphi process and through discussion with a patient focus group.
Impact of ENT UK Foundation funding
ENT UK Foundation funding has helped establish a clinical study in two large NHS thyroid cancer referral hospitals in North London. In-depth semi-structured interviews were conducted to explore patients' experience with newly diagnosed low-risk DTC, consultant thyroid surgeons, and thyroid cancer specialist nurses (thyroid cancer CNSs). The study's first phase was completed in October 2023, with the second phase scheduled to commence in March 2024.
The funding from the ENT UK Foundation has helped with the expenses related to the study set-up and data analysis using the qualitative software QSR NVivo 12.