HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS		QUICK SEARCH:   [advanced] Author: Keyword(s): Year:  Vol:  Page:

This Article Full Text Full Text (PDF) All Versions of this Article: EJE-09-0383v1 161/3/483    most recent Alert me when this article is cited Alert me if a correction is posted Services Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Citing Articles Citing Articles via Web of Science (1) Citing Articles via Google Scholar Google Scholar Articles by Estcourt, S. Articles by Vaidya, B. Search for Related Content PubMed PubMed Citation Articles by Estcourt, S. Articles by Vaidya, B.

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

Department of Endocrinology, Royal Devon and Exeter Hospital and Peninsula Medical School, Exeter EX2 5DW, UK¹ British Thyroid Foundation, Harrogate, UK² Department of Endocrinology, Royal Victoria Infirmary, Newcastle-upon-Tyne, UK³ Henry Wellcome Laboratories for Integrative Neuroscience and Endocrinology, University of Bristol, Bristol, UK

(Correspondence should be addressed to B Vaidya; Email: bijay.vaidya{at}pms.ac.uk)

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.