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TEAMeD receives Judges’ Special Award at Bayer Ophthalmology Awards

21 December 2015

The Thyroid Eye Disease Amsterdam Declaration Implementation Group (TEAMeD), formed in 2010, received the Judges’ Special Award on 3 December 2015, at the prestigious Bayer Ophthalmology Awards ceremony held in London.

The Judges commented: “This is a fantastic team providing fantastic care. It is an amazing initiative which doesn’t quite fit into any single category in this year’s awards but it has strong aspects of each of the three group categories and so all of the judging panel agreed that this entry should be recognised and awarded the Judges’ Special Award. The performance of this team is outstanding and a thorough service is being provided which is something that patients will really benefit from. We believe that one day every Trust will be using their guidelines.”  The judges also felt that TEAMeD’s achievements had potential for global impact.

TEAMeD comprises 12 representatives, both patient and medical, of eight stakeholder organisations*.  Its aims are to implement the Amsterdam Declaration1 (AD) in the UK. The AD (signed in 2009 by 84 international patient/medical organisations) pledged to improve care for Thyroid Eye Disease (TED). TEAMeD has focused on promoting preventive measures, early diagnosis and treatment for patients with TED in the UK and provides education and support to professionals and patients.

A key achievement in 2015 has been the production of guidelines for the management of patients with Graves’ orbitopathy, published by the Royal College of Physicians.

“Thyroid eye disease is a disfiguring condition which causes swelling around the eyes, ‘starey’ eyes, double vision and sometimes loss of vision”, said Prof Colin Dayan, thyroid specialist from Cardiff University and Chair of TEAMeD. “Over 50,000 people in the UK are affected and many could avoid years of social isolation and reconstructive surgery if the condition were recognised and referred early to appropriate specialists. We have brought patient and professional organisations together to collect data on delays and treatment variation around the UK, as well as achieve consensus on referral guidelines and best practice with eye specialists and physicians. Currently only 20% of patients are ever seen in a specialist multidisciplinary clinic. We aim to halve the time from first symptoms to being seen by a specialist, and increase the percentage being cared for by specialists with extensive experience of this condition. We are delighted that the Judges valued our work, and hope that this award will also help to raise awareness of the importance of prompt referral to specialist care to improve outcomes in Thyroid Eye Disease.”

Janis Hickey, Director and Founder of the British Thyroid Foundation, a national patient support organisation based in Harrogate, North Yorkshire, said: “As a patient representative on the project I am delighted that our work over the past five years has been acknowledged by this prestigious award. It has given us an opportunity to let people know about what can done to help those with thyroid eye disease, and we are committed to putting measures in place to ensure that happens”.

TEAMeD is actively involved in auditing the targets of the Amsterdam Declaration to:

  • Raise awareness of this condition among health care professionals and managers
  • Establish pathways of referral and care
  • Support existing centres of excellence in management of this condition
  • Create new centres of excellence in localities where they are lacking
  • Establish audit and monitoring mechanisms of quality assurance of provision of care to people with Graves’ orbitopathy
  • Implement measures to reduce the incidence and morbidity of the disease

The key aims of TEAMeD are:

  • Provision of good quality information for patients
  • Implementation of preventive measures
  • Early diagnosis
  • Timely access to eye/endocrine care
  • Promotion of research in the field

TEAMeD has established processes and tools that can act as levers for change. The key achievements of TEAMeD are:

  • Development and pilot of a diagnostic tool which identified previously undiagnosed patients with TED in Endocrine Clinics with 92% accuracy, published in 20152 and presented in an international meeting6. This tool is available to clinicians and recommended by national guidelines.3
  • Development of a web-based Anti-Smoking Tool together with TED patients who were smokers giving advice on the risks of smoking designed specifically for patients with TED: http://www.btf-thyroid.org/projects/teamed/235-ted-and-smoking-information-for-patients
  • Publication of national guidelines on initial assessment, management outside specialised centres and referral pathways for patients with TED3 (2015). These guidelines have been available on line since April 2015 and are endorsed by professional organisations. (http://www.btf-thyroid.org/projects/teamed)

Other important achievements of TEAMeD include:

  • In 2014 they a unique patient and public involvement event4 that prioritised areas of research in TED and formulated 6 research study designs. Formal feedback of the event provided median scores for each session of 1-2, whereby 1 = excellent to 5 = poor.
  • They have raised awareness of inequalities in patient care among ophthalmologists and endocrinologists by analysing and publishing data for orbital decompression for TED in England, which identified a 30-fold variance in the rates of orbital decompression performed per unit population, by geographical area5.
  • Discussions with the Clinical Reference Group about commissioning specialised ophthalmology services for TED resulted in the adoption of TEAMeD’s recommendations for a patient pathway, which will be beneficial for patients.

TEAMeD has conducted the following:

  • A survey of recently diagnosed patients, which provided information on treatment given, referral delays, percentages of patients seen in joint clinics, use of radioiodine, awareness of smoking risks and advice given.
  • A web survey of the specialist clinics for TED which showed that more than 30 centres in the UK treat moderate / severe TED and around 38% have clinics conducted jointly by an ophthalmologist and an endocrinologist.

TEAMeD is currently conducting a small-scale trial in Endocrine Departments in England and Wales of a ‘TED Early Warning Card’ designed for issue to patients with Graves’ disease at diagnosis.

The initiatives of TEAMeD (shared via TEAMeD’s First Report, October 2014: http://www.btf-thyroid.org/projects/teamed/225-about-teamed have potential for reducing the burden of this disease to patients and the NHS.

References

  1. Perros P, Wiersinga WM. The Amsterdam Declaration for people with thyroid eye disease. Thyroid. 2010;20:245-6).
  2. Mitchell AL, Goss L, Mathiopoulou L, Morris M, Vaidya B, Dickinson AJ, Quinn A, Dayan C, McLaren J, Hickey JL, Lazarus JH, Rose GE, Foley P, MacEwen CJ, Perros P. Diagnosis of Graves’ orbitopathy (DiaGO): results of a pilot study to assess the utility of an office tool for practicing endocrinologists. J Clin Endocrinol Metab. 2015;100:E458-62.
  3. Perros P, Dayan CM, Dickinson AJ, Ezra D, Estcourt S, Foley P, Hickey J, Lazarus JH, MacEwen CJ, McLaren J, Rose GE, Uddin J, Vaidya B. Management of patients with Graves’ orbitopathy: initial assessment, management outside specialised centres and referral pathways. Clin Med. 2015;15:173-8.
  4. Perros P, Dayan C, Dickinson AJ, Ezra DG, Hickey JL, Hintschisch C, Kahaly GJ, Lazarus J, Ludgate M, Bartès B, MacEwen C, Mitchell AL, Morris D, O’ Connor N, Pearce SH, Rose G, Salvi M, Wiersinga WM, Williamson A. Future research in Graves’ orbitopathy: from priority setting to trial design through patient and public involvement. Thyroid. 2015 Nov, 25(11):1181-1184. doi/10.1089/thy.2015.0222
  5. Perros P, Chandler T, Dayan CM, Dickinson AJ, Foley P, Hickey J, MacEwen CJ, Lazarus JH, McLaren J, Rose GE, Uddin JM, Vaidya B. Orbital decompression for Graves’ orbitopathy in England. Eye (Lond). 2012;26:434-7. doi/ 10.1038/eye.2011.323
  6. Mitchell AL et al. Diago (Diagnosis of Graves’ orbitopathy): An Office Tool for Practising Endocrinologists. International Congress of Endocrinology / Endo 2014 (https://endo.confex.com/endo/2014endo/webprogram/Paper13049.html).

*Members of TEAMeD and organisations represented: Mrs JL Hickey3, Professor GE Rose2 and Mr P Foley3 – British Thyroid Foundation, Mrs J McLaren7 and Professor CM Dayan1 – Thyroid Eye Disease Charitable Trust, Mr DG Ezra9 – Royal College of Ophthalmologists, Mr J Uddin2 – British OculoPlastic Surgery Society, Professor CJ MacEwen5 – Scottish Ophthalmologists Club, Professor JH Lazarus1 – Royal College of Physicians, Dr P Perros4 – Society for Endocrinology and Dr B Vaidya6 – British Thyroid Association, and Dr AL Mitchell8

  1. Institute of Molecular and Experimental Medicine, Cardiff University
  2. Orbital Unit, Moorfields Eye Hospital, London
  3. British Thyroid Foundation, Harrogate
  4. Department of Endocrinology, Newcastle upon Tyne Hospitals NHS Foundation Trust
  5. Department of Ophthalmology, Ninewells Hospital, Dundee
  6. Department of Endocrinology, Royal Devon and Exeter Hospital
  7. Thyroid Eye Disease Charitable Trust, Bristol
  8. Newcastle Eye Centre, Newcastle upon Tyne Hospitals NHS Foundation Trust
  9. NIHR Biomedical Research Centre for Ophthalmology, Moorfields Eye Hospital, London