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

Estcourt, Stephanie, Hickey, Janis, Perros, Petros, Dayan, Colin Mark ORCID: https://orcid.org/0000-0002-6557-3462 and Vaidya, Bijay 2009. The patient experience of services for thyroid eye disease in the United Kingdom: results of a nationwide survey. European Journal of Endocrinology 161 (3) , pp. 483-487. 10.1530/EJE-09-0383

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Abstract

Background A recent consensus statement from the European Group on Graves' Orbitopathy recommends referring all patients with thyroid eye disease (TED), except the mildest cases, to a specialist multidisciplinary 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 females (91%) and aged above 45 (74%). There were delays in the diagnosis and referral. In 26% of responders, the time lapsed from the first symptoms to the diagnosis of TED for over 12 months. There was a wide variation in the type of clinic and healthcare professionals involved in the treatment of TED. Only 25% of the responders attended a specialist TED clinic. Out of these, 33% waited over 6 months from the first consultation with a doctor to being seen at a specialist TED clinic. Only 56% of 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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine Systems Immunity Research Institute (SIURI)
Subjects:	R Medicine > R Medicine (General)
Publisher:	European Society of Endocrinology
ISSN:	0804-4643
Last Modified:	20 Oct 2022 08:53
URI:	https://orca.cardiff.ac.uk/id/eprint/29931

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