Background: Clinically significant Graves orbitopathy (GO) develops in 20% of those with Graves Disease (GD). Up to 90% of cases present at the same time as, or after, hyperthyroidism develops. Most cases of GD in the UK are managed in endocrinology clinics. Despite this, patients report significant delays before a correct diagnosis of GO is made. We argued that measures to increase awareness of the early signs of GO in those with GD and establishing a fast-track referral pathway to specialist care should overcome these delays and improve outcomes.
Aims: (1) To determine whether issuing a GO early warning card to all patients with an established diagnosis of GD raises awareness of GO and facilitates early diagnosis.
(2) To determine what percentage of cards result in a telephone contact.
(3) To determine the number of false reports from card carriers.
Methods: We designed early warning cards, detailing common symptoms of GO and a telephone contact number for patients who develop eye symptoms. Cards were distributed to 171 patients with a diagnosis of GD, but without known GO, attending endocrine clinics in Newcastle, Exeter, Cardiff, Edinburgh and Leeds. We recorded telephone contacts over 3 months and feedback from patients regarding their experience of this initiative.
Results: Over 3 months, 10 telephone contacts were received (6% of cards issued). One patient called twice. 1/10 (10%) calls were managed with telephone advice alone, while the other 9 resulted in an additional clinic review. Overall, 4 diagnoses of GO were made. Feedback received to date suggests that most patients felt that having a card was useful and increased their awareness of GO.
Conclusions: In this pilot study, we found that it is feasible to distribute GO early warning cards to patients in busy endocrine clinics and that this does not result in an excessive burden of telephone enquiries. Patients generally appreciated the additional information offered and viewed the project positively.