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The patient experience of services for thyroid eye disease in the United Kingdom: Results of a nationwide survey

S Estcourt, Royal Devon & Exeter Hospital, Exeter, United Kingdom
J Hickey, British Thyroid Foundation, Harrogate, United Kingdom
P Perros, Department of Endocrinology, Freeman Hospital, Newcastle upon Tyne, UK, Newcastle upon Tyne, United Kingdom
C Dayan,
B Vaidya, Department of Endocrinology, Peninsula Medical School, Exeter, EX2 5DW, United Kingdom

Correspondence: Bijay Vaidya, Email: bijay.vaidya{at}pms.ac.uk

Background: A recent consensus statement from The European Group on Graves’ Orbitopathy (EUGOGO) recommends referring all patients with thyroid eye disease (TED), except the mildest cases, to a specialist multi-disciplinary clinic.

Objective: To study the patients’ experiences of accessing services for the treatment of TED in the UK.

Methods: A postal questionnaire survey of 395 members of two patients support organisations for TED in the UK, the TED Charitable Trust and the British Thyroid Foundation.

Results: The response rate was 67%. The majority of responders were female (91%) and aged above 45 years (74%). There were delays in the diagnosis and referral. In 26% of responders, the time lapsed between first symptoms to the diagnosis of TED was over 12 months. There was a wide variation in type of clinic and healthcare professionals involved in the treatment of TED. Only 25% of the responders attended a specialist TED clinic. Of these, 33% waited over 6 months from the first consultation with a doctor to being seen at a specialist TED clinic. Only 56% responders were satisfied with the treatment they received for TED. More responders who had attended a specialist TED clinic were satisfied with the treatment than those who had not attended a specialist clinic (67% vs. 52%, p<0.05).

Conclusion: Only a minority of patients with TED are treated at a specialist TED clinic in the UK. Those patients who are treated at a specialist TED clinic are more likely to be satisfied with the treatment for their TED.