Purpose: To provide long-term follow-up data on patients with Graves ophthalmopathy in an incidence cohort of 120 patients.
Methods: Data were obtained from a comprehensive review of each patient's community medical record, a follow-up survey, or both.
Results: The median interval between the initial ophthalmic examination and most recent follow-up was 9.8 years (range, 64 days to 17.4 years). Follow-up of more than 5 years was available for 96 patients (80.0 percent), whereas follow-up exceeding 10 years was achieved for 59 patients (49.2 percent). Persistent visual loss from optic neuropathy occurred in two eyes, with final visual acuities of 20/30 and 20/60, respectively. None of the patients reported deterioration of vision attributable to Graves ophthalmopathy in the interval since their last ophthalmic examination at the authors' institution. Two patients (2.2 percent) had constant diplopia, but it was correctable with spectacles (prisms) in each case. Nearly one third of respondents had had ocular discomfort during the preceding 4 weeks; the most frequent cause in 72 percent of patients was dry eyes. Among the respondents to the survey, 60.5 percent believed that the appearance of their eyes had not returned to what it had been before the development of thyroid disease, 51.6 percent thought that their eyes appeared abnormal, and 37.9 percent were dissatisfied with the appearance of their eyes.
Conclusions: Although with treatment few patients have long-term functional impairment from Graves ophthalmopathy, more than one third of patients are dissatisfied with their ultimate appearance. The psychologic, aesthetic, economic, and social sequelae of the disorder require further definition by formal outcomes studies.