Graves' ophthalmopathy (GO) is a potentially sight threatening orbital disease that can have a large negative impact on the quality of life of the patient. Studies on long-term effects of GO on the quality of life are few. The aim of this study is to evaluate the health-related quality of life in patients with GO, before and after orbital decompression surgery. This is a prospective, longitudinal, interventional study in which patients who had orbital decompression were given the Graves´ ophthalmopathy quality of life questionnaire (GO-QOL) before and after surgery. The GO-QOL is a disease specific instrument to measure health-related quality of life. The answers are transformed into scores from 0-100 on 2 subscales. Higher score indicates better health. An additional patient satisfaction questionnaire was also given post-surgery. A significant, long-term, improvement in quality of life after orbital decompression was noted (p < 0.001, paired t-test). 50 patients were included and follow-up time was 5.3 ± 1.2 years (mean ± SD). The QOL-scores increased 28 ± 35 and 26 ± 31 points, respectively, on the two subscales, "visual functioning" and "appearance" (mean ± SD). The patient satisfaction questionnaire showed that 88% of the patients would recommend orbital decompression to a fellow patient. Persistent disturbing oscillopsia was seen in 2% and persistent disturbing infraorbital nerve hypoesthesia in 8% of the patients. Orbital decompression surgery has a positive effect on quality of life for patients with severe GO. The GO-QOL questionnaire showed significant improvement in QOL-scores even many years after surgery.
Keywords: Graves’ ophthalmopathy; long-term follow-up; orbital decompression; quality of life; thyroid associated ophthalmopathy.