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


CONCLUSIONS
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.
Estcourt
Stephanie
S
Department of Endocrinology, Royal Devon and Exeter Hospital and Peninsula Medical School, Exeter EX2 5DW, UK.
Hickey
Janis
J
Perros
Petros
P
Dayan
Colin
C
Vaidya
Bijay
B
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003625:Data Collection; D005260:Female; D049970:Graves Ophthalmopathy / Q000453:epidemiology / Q000523:psychology / Q000628:therapy*; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D006113:United Kingdom / Q000453:epidemiology; D055815:Young Adult