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

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.

Orbital decompression for Graves’ orbitopathy in England

“…7 The data were generated by coders and concerns about the accuracy of such information have been voiced. 13,14 However, Health Resource Group data are increasingly considered appropriate for use in health-care research.…”

“…This finding confirms the impression, from previous surveys, that access of patients with Graves' orbitopathy to specialist centres is inequitable. 4,7 Unfortunately, we were unable to access data on the indications for orbital decompressions in the studied population (optic neuropathy vs rehabilitation). We are also unable to comment on availability and use of medical treatments, or availability of surgical expertise, these being factors that could potentially influence the rates of decompression.…”

“…[1][2][3] Surveys of health-care professionals and of patients have illustrated that Graves' orbitopathy is often treated inadequately and in centres with little experience. [4][5][6][7] The Amsterdam Declaration is a recent incentive supported by many national and international professional and patient-led organizations, aiming to improve the outcomes of patients with Graves' orbitopathy. 8 This report provides baseline data against which improvement in the management of patients with Graves' orbitopathy might be compared in the future.…”

THERAPY OF ENDOCRINE DISEASE: Endocrine dilemma: management of Graves’ orbitopathy

“…It has been estimated that about 30% of patients attending a thyroid-eye clinic and nearly the half of those attending a nonspecialist clinic, are not fully satisfied with the treatments they have received. This suggests first that the late referral of patients to a joint thyroid-eye clinic may positively affect the final outcome of the disease (134), and secondly, that although medical and surgical techniques have improved over time, GO still has a marked negative effect on the patients' QoL even many years after treatment and that should be considered a chronic disease (135). This is probably due to the fact that the face is the seat of recognition for a human being, and living with a change in the appearance, as a result of any pathological condition, is always a challenging task (136).…”

Quality of life in thyroid eye disease: impact of quality of care

“…Several surveys of patients with TED and health care professionals involved in the management of this disease have shown evidence for shortcomings in the provision of quality of care, which could contribute to the patients' poor QOL (21,(29)(30)(31)(32)(33). A recent nationwide survey of patients with TED in the United Kingdom has revealed delays in diagnosis, wide variability in access to specialist centres and appropriate treatment and overall low patient satisfaction with treatment (30). More than half of the patients in the study were initially given incorrect diagnoses for their eye symptoms, and for more than a quarter of the patients, it took longer than a year for the correct diagnosis of TED to be made.…”