This is the sort of basic "what is the current state" paper which tends to be unexciting, but is still important.
Particularly note this sentence: A large proportion of patients (54%) were unaware of their thyroid status. Then consider the attitudes that some patients have encountered in actually trying to get hold of results.
One question that resonates is what happened to those who had some symptoms but were excluded from a diagnosis of TED? Did they have something else? Did they receive appropriate referral and treatment?
Orbit. 2017 Mar 15:1-11. doi: 10.1080/01676830.2017.1280057. [Epub ahead of print]
Management of thyroid eye disease in the United Kingdom: A multi-centre thyroid eye disease audit.
Mellington FE1, Dayan CM2, Dickinson AJ3, Hickey JL4, MacEwen CJ5, McLaren J6, Perros P3, Rose GE1,7, Uddin J1,7, Vaidya B8, Foley P9, Lazarus JH9, Mitchell A9, Ezra DG1,7,9; Thyroid Eye Disease Amsterdam Declaration Implementation Group (TEAMeD).
1 a Moorfields Eye Hospital , London , United Kingdom.
2 b Institute of Molecular and Experimental Medicine, Cardiff University School of Medicine , Cardiff , United Kingdom.
3 c Newcastle Eye Centre, Newcastle upon Tyne Hospitals NHS Foundation Trust , Newcastle upon Tyne , United Kingdom.
4 d British Thyroid Foundation , Harrogate , United Kingdom.
5 e Department of Ophthalmology , Ninewells Hospital , Dundee , United Kingdom.
6 f Thyroid Eye Disease Charitable Trust , Bristol , United Kingdom.
7 g UCL Institute of Ophthalmology Biomedical Research Centre for Ophthalmology , London , United Kingdom.
8 h Department of Endocrinology , Royal Devon and Exeter Hospital and University of Exeter Medical School , Exeter , United Kingdom.
9 i Members of TEAMeD and organisations represented: Jane Dickinson, J. L. Hickey, G. E. Rose and P. Foley - British Thyroid Foundation, J. McLaren and C. M. Dayan - Thyroid Eye Disease Charitable Trust, D. G. Ezra - Royal College of Ophthalmologists, J. Uddin - British Oculoplastic Surgery Society, C. J. MacEwen - Scottish Ophthalmologists Club, J. H. Lazarus - Royal College of Physicians, P. Perros - Society for Endocrinology and B. Vaidya - British Thyroid Association.
This article provides baseline data and highlight any major deficiencies in the current level of care provided for adult patients with thyroid eye disease (TED). We used prospective nonrandomized cross-sectional multicenter observational study. During a 3-month period June-August 2014, consecutive adult patients with TED who presented to nominated specialist eye clinics in the United Kingdom, completed a standardized questionnaire. Main outcome measures were: demographics, time from diagnosis to referral to tertiary centre, time from referral to review in specialist eye clinic, management of thyroid dysfunction, radioiodine and provision of steroid prophylaxis, smoking, and TED classification. 91 patients (mean age 47.88 years) were included. Female-to-male ratio was 6:1. Mean time since first symptoms of TED = 27.92 (73.71) months; from first visit to any doctor with symptoms to diagnosis = 9.37 (26.03) months; from hyperthyroidism diagnosis to euthyroidism 12.45 (16.81) months. First, 13% had received radioiodine. All those with active TED received prophylactic steroids. Seven patients who received radioiodine and did not have TED at the time went on to develop it. Then, 60% patients were current or ex-smokers. 63% current smokers had been offered smoking cessation advice. 65% patients had active TED; 4% had sight-threatening TED. A large proportion of patients (54%) were unaware of their thyroid status. Not enough patients are being provided with smoking cessation advice and information on the impact of smoking on TED and control of thyroid function.
Amsterdam declaration; Thyroid eye disease; radioiodine; smoking; thyroid function
As this is not published, we cannot be certain whether the full paper will be accessible. If you find it online and accessible, please let me know so I can add a link here.