Literature DB >> 19542244

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

Stephanie Estcourt1, Janis Hickey, Petros Perros, Colin Dayan, Bijay Vaidya.   

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.

Entities:  

Mesh:

Year:  2009        PMID: 19542244     DOI: 10.1530/EJE-09-0383

Source DB:  PubMed          Journal:  Eur J Endocrinol        ISSN: 0804-4643            Impact factor:   6.664


  17 in total

1.  Orbital decompression for Graves' orbitopathy in England.

Authors:  P Perros; T Chandler; C M Dayan; A J Dickinson; P Foley; J Hickey; C J Macewen; J H Lazarus; J McLaren; G E Rose; J M Uddin; B Vaidya
Journal:  Eye (Lond)       Date:  2011-12-09       Impact factor: 3.775

2.  Therapy: evidence-based treatment of Graves ophthalmopathy.

Authors:  Wilmar M Wiersinga
Journal:  Nat Rev Endocrinol       Date:  2009-12       Impact factor: 43.330

3.  Changing trend in referral to secondary care specialist thyroid eye disease clinic following the Amsterdam declaration.

Authors:  Annika S Quinn; Leticia R Dujardin; Bridget Knight; James Benzimra; Anthony G Quinn; Bijay Vaidya
Journal:  Int Ophthalmol       Date:  2017-02-08       Impact factor: 2.031

4.  Management of patients in a combined thyroid eye clinic in secondary care.

Authors:  J D Benzimra; A G Quinn; T Kersey; D McGrane; L Goss; B Vaidya
Journal:  Int Ophthalmol       Date:  2013-04-03       Impact factor: 2.031

Review 5.  Graves' orbitopathy: imperfect treatments for a rare disease.

Authors:  Luigi Bartalena
Journal:  Eur Thyroid J       Date:  2013-11-20

Review 6.  Thyroid eye disease: current and potential medical management.

Authors:  Jessica M Pouso-Diz; Jose M Abalo-Lojo; Francisco Gonzalez
Journal:  Int Ophthalmol       Date:  2020-01-09       Impact factor: 2.031

7.  Does early response to intravenous glucocorticoids predict the final outcome in patients with moderate-to-severe and active Graves' orbitopathy?

Authors:  L Bartalena; G Veronesi; G E Krassas; W M Wiersinga; C Marcocci; M Marinò; M Salvi; C Daumerie; C Bournaud; M Stahl; L Sassi; C Azzolini; K G Boboridis; M P Mourits; M R Soeters; L Baldeschi; M Nardi; N Currò; A Boschi; M Bernard; G von Arx; P Perros; G J Kahaly
Journal:  J Endocrinol Invest       Date:  2017-02-07       Impact factor: 4.256

8.  An Intelligent Diagnostic System for Thyroid-Associated Ophthalmopathy Based on Facial Images.

Authors:  Xiao Huang; Lie Ju; Jian Li; Linfeng He; Fei Tong; Siyu Liu; Pan Li; Yun Zhang; Xin Wang; Zhiwen Yang; Jianhao Xiong; Lin Wang; Xin Zhao; Wanji He; Yelin Huang; Zongyuan Ge; Xuan Yao; Weihua Yang; Ruili Wei
Journal:  Front Med (Lausanne)       Date:  2022-06-10

9.  The 2016 European Thyroid Association/European Group on Graves' Orbitopathy Guidelines for the Management of Graves' Orbitopathy.

Authors:  Luigi Bartalena; Lelio Baldeschi; Kostas Boboridis; Anja Eckstein; George J Kahaly; Claudio Marcocci; Petros Perros; Mario Salvi; Wilmar M Wiersinga
Journal:  Eur Thyroid J       Date:  2016-03-02

Review 10.  Extrathyroidal manifestations of Graves' disease: a 2014 update.

Authors:  Luigi Bartalena; Vahab Fatourechi
Journal:  J Endocrinol Invest       Date:  2014-06-10       Impact factor: 4.256

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