Milner, Thomas Daniel1; Bliss, Richard2; Farnell, Kate3
1 Department of Otolaryngology, Queen Elizabeth University Hospital, Glasgow, United Kingdom
2 Department of General Surgery, Royal Victoria Infirmary, Newcastle, United Kingdom
3 Butterfly Thyroid Cancer Trust, Rowlands Gill, Tyne & Wear, United Kingdom
Background/Purpose: Patients undergoing radioiodine treatment for thyroid cancer often have unmet informational needs when undergoing treatment1. This paucity of information may relate to conflicting advice surrounding the practicalities of radioiodine treatment2. This survey aims to establish patient experience of radioiodine throughout the UK, to identify where practice differs and where informational support could be improved.
Methods: This represents the first UK-wide patient satisfaction survey of thyroid cancer patients undergoing radioiodine. The survey was conducted in 2016, with questionnaires available online on the Butterfly Thyroid Cancer Trust website, with some respondents contacted in clinics or via email. 396 responses were received, with participants undergoing treatment in 65 UK-based hospitals.
Results: Of respondents, 81% were female, with individuals aged 50-59 representing the majority. Radioiodine information was received by 98% of patients, with 86% satisfied with information quality. Disparity was noted in low iodine diet advice, with 87% of patients asked to observe a diet pre-treatment, and 32% required to maintain the diet in hospital. Recombinant TSH was offered to 64% of patients. Treatment delivery varied from outpatient management to a 9-day hospital stay. Post-treatment advice varied with regard to clothing disposal, mobile phone use, and allowable exposure to staff and relatives. 65.7% of patients suffered side effects, with dry mouth the most frequent adverse outcome. 40% of patients reported fear surrounding radioiodine treatment.
Discussion & Conclusion: Thyroid cancer patients receiving radioiodine report high levels of information provision. However, despite all best efforts to deliver sufficient information, 40% of patients reported fear surrounding radioiodine treatment.
- Banach R, Bartès B, Farnell K et al. Results of the Thyroid Cancer Alliance international patient/survivor survey: psychosocial/informational support needs, treatment side effects and international differences in care. Hormones. 2013; 12(3): 428-38.
- Sawka AM, Goldstein DP, Brierley JD et al. The impact of thyroid cancer and post-surgical radioiodine treatment on the lives of thyroid cancer survivors: a qualitative study. PLoS One. 2009; 4(1): e4191.