In 2008 we carried out a postal questionnaire survey of 395 members of the Thyroid Eye Disease Charitable Trust (TEDct) and the British Thyroid Foundation (BTF). The data collected have now been presented in a paper, which was accepted for publication in the European Journal of Endocrinology. See: Estcourt S, Hickey J, Perros P, Dayan C, Vaidya B. The patient experience of services for thyroid eye disease in the United Kingdom: Results of a nationwide survey. Eur J Endocrinol 2009; first published on line 19 June 2009 (DOE: 0: EJE-09-0383v1-EJE-09-0383)

Survey Abstract: The Patient Experience of Services for Thyroid Eye Disease in the United Kingdom: A Questionnaire Survey

Stephanie Estcourt, Janis Hickey, Colin Dayan, Bijay Vaidya

Department of Endocrinology, Royal Devon & Exeter Hospital, Exeter, UK; British Thyroid Foundation, UK; Department of Endocrinology, Bristol Royal Infirmary, Bristol, UK.

Introduction

Thyroid eye disease (TED) is a chronic disorder with a potential to cause facial disfigurement and visual impairment. Recent surveys of clinicians have shown variability and deficits in the management of TED. The European Group on Graves’ Orbitopathy (EUGOGO) recently published guidelines on the management of TED, recommending that all patients with TED should be referred to specialist multi-disciplinary TED clinics. We aimed to study the patients’ experience of the services for the treatment of TED in the UK.

Methods

We carried out a postal questionnaire survey of 395 members of the Thyroid Eye Disease Charitable Trust and the British Thyroid Foundation; the patient support organisations for TED in the UK.

Results

The response rate was 67%. The respondents represented patients with TED from all regions of the UK. The majority of respondents were female (91%) and above the age of 45 years (74%). Seventy-nine percent and 41% had a history of double vision and decreased vision, respectively. Only 25% of the respondents attended a specialist TED clinic. Of these, 33% waited 6 months or more from the first consultation with a doctor to being seen at a specialist TED clinic. While 60% felt they had been offered help to cope with the physical aspects of the disease, only 27% agreed they had been helped to deal with the psychological impact and just 56% respondents were satisfied with the treatment they received for TED overall. More respondents 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 in the UK are treated at a specialist TED clinic. Patients who are treated at a specialist TED clinic are more likely to be satisfied with the treatment for their TED.