The BTF has set up Closed Facebook Groups for people diagnosed with thyroid eye disease. If you would like to join please email firstname.lastname@example.org
Access of patients with thyroid eye disease to specialist centres and expertise varies widely. Working with the Thyroid Eye Disease Charitable Trust (TEDct) our aim is to establish pathways of referral and care: shorten referral times and ensure access to the medical professional with the appropriate level of expertise, and high standards of treatment and care.
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)
You can see details of the survey here.
The Next Steps
The BTF and TEDct worked together to assist the implementation of the Amsterdam Declaration on Graves’ Orbitopathy. The Amsterdam Declaration is a pledge aimed to raise awareness of Graves’ Orbitopathy among health professionals and the public and to draw attention to the fact that treatment of patients with this condition can, and should improve.
The objectives of the Amsterdam Declaration are:
- to support plans for implementing better care and prevention
- to minimise the morbidity associated with Graves’ orbitopathy (ted) and improve the patient experience and quality of life
- to prevent the development of Graves’ orbitopathy in people at high risk
The wide variation in management and care pathways for people with thyroid eye disease in the UK, highlighted in surveys conducted over the past few years, are a matter of concern for patients and for medical professionals with an interest in bringing about improvements for patients.
To take forward our preliminary discussions about guidance for patients and professionals, the next stage was to invite representatives of professional organisations with an interest in thyroid eye disease to join a working group and bring their expertise to the process. The original working group - BTF and TEDct - was subsequently joined by representatives of professional organisations: the Royal College of Physicians, the Royal College of Ophthalmologists, the Scottish Ophthalmologists Club, the Society for Endocrinology, the British OculoPlastic Surgery Society, and the British Thyroid Association to form TEAMeD - The Thyroid Eye Disease Amsterdam Declaration Implementation Group UK.
The Amsterdam Declaration
The British Thyroid Foundation was among over 80 professional and patient organisations around the world that signed the declaration - known as ‘The Amsterdam Declaration on Graves’ Orbitopathy: Improving Outcomes for Thyroid Eye Disease’ - on 30 October 2009 at the conclusion of the10th International Symposium on Graves’ Orbitopathy in Amsterdam. Janis Hickey, BTF Director, who has herself undergone multiple surgeries and treatment for thyroid eye disease and has campaigned for better treatment, was there personally to sign on behalf of BTF.
The signatories have agreed and committed to goals and a five-year target programme to improve the care of people with Graves’ Orbitopathy.
Dr Petros Perros, Consultant Endocrinologist at the Royal Victoria Infirmary, Newcastle Upon Tyne, incoming President of the European Group on Graves’ Orbitopathy (EUGOGO) and former BTF Trustee, said: ‘Sight loss due to thyroid eye disease can be prevented by appropriate management, yet it still occurs even in countries with advanced health systems. This is largely due to delays in starting treatment because health professionals are not always aware of the remarkable difference that treatment can make in restoring visual function and appearance.
‘This declaration has been supported by numerous patient-led and professional organisations around the world, which is good news for patients with thyroid eye disease, as it will raise awareness and lead to improved care.’
Janis Hickey (left, with EUGOGO President, Professor Wiersinga) welcomed the Declaration, saying: ‘I know from personal experience what a devastating impact thyroid eye disease can have on one’s life. I am glad to support this Declaration which will help us to agree on best practice and move forward in improving diagnosis and treatment for patients.’
As stated in the Amsterdam Declaration: The care of people with GO can be vastly improved by making centres of excellence more accessible to them. People at high risk of developing Graves’ orbitopathy can be identified and effective risk management can potentially lessen the severity of the disease. Conventional treatments are effective when used appropriately and by centres with expertise.
For the full text of the declaration, see this page.
Raising Awareness of Thyroid Eye Disease
Petros Perros, Consultant Endocrinologist at the Joint Thyroid Cancer Clinic in Newcastle and Medical Editor of BTF News, published a review article in 2009 about thyroid eye disease (also known as Graves’ orbitopathy) in collaboration with Christopher Neoh and Jane Dickinson who are Consultant Ophthalmologists at the Royal Victoria Infirmary in Newcastle, to raise awareness among clinicians and to improve their understanding. The authors are all members of the European Group on Graves’ Orbitopathy (EUGOGO) – an international, multidisciplinary consortium of clinicians dedicated to improving the management of thyroid eye disease – as well as having extensive personal experience in the field. The article, which includes a section on the patient perspective contributed by Janis Hickey, BTF Director, appeared in the British Medical Journal in March 2009.
Thyroid eye disease is an autoimmune disorder, usually appearing at the same time as an over-active thyroid, although it can present before or after the thyroid disorder is diagnosed.
As the authors point out, many patients have distressing symptoms, and some develop complications that threaten their sight. Even in countries with advanced healthcare systems, the problem can cause loss of sight in some instances, due largely to delays in starting treatment.
Not all patients have sight-threatening complications, but having an altered appearance can be very distressing and some patients become reclusive. The authors point out that the disease affects mainly women, who are often young or middle-aged and at the peak of their career when the disease strikes.
The authors explain the causes of thyroid disease and describe the common early symptoms, which - besides the altered appearance due to swelling and redness of the eye and eyelids - may include grittiness, sensitivity to light, and double or blurred vision. In the experience of the authors, thyroid eye disease is often misdiagnosed as allergic conjunctivitis.
The article then outlines how to make an accurate diagnosis, and how to manage the disease, including referral to specialist centres when appropriate.
Janis Hickey (above) got thyroid eye disease in 1984. Although it didn’t threaten her sight, it was unsightly and uncomfortable. She says the chief concern of experts was how her eyes functioned, not her appearance. She had several minor cosmetic operations but with little result. Eventually she had rehabilitative surgery in 1998. ‘It was not easy – several operations were needed – but I got there in the end’ writes Janis. ‘I can’t help thinking, though, that getting there should not have been such a struggle.’
The authors recommend that a diagnosis of thyroid eye disease should be considered in all patients with a background of autoimmune thyroid disease presenting with blurred vision or conjunctivitis, and that doctors should refer patients with thyroid eye disease to specialist centres in all but the mildest of cases.
The article includes a list of education resources for clinicians, including a learning module on the British Medical Journal learning web site, as well as a list of information resources for patients.
Perros P, Neoh C, Dickinson J. Thyroid eye disease. Brit Med J 2009;338:654-650.