Aim-To develop a reliable and valid disease specific quality of life questionnaire (the GO-QOL) for patients with Graves' ophthalmopathy (GO), that can be used to describe the health related quality of life and changes in health related quality of life over time as a consequence of disease and treatment. Methods-70 consecutive GO patients (age >18 years) who were referred for the first time to the combined outpatient clinic of the orbital centre and the department of endocrinology completed the 16 questions of the GO-QOL. Additional information on general quality of life and disease characteristics was obtained. Construct validity and internal consistency of the disease specific questionnaire was determined, based on principal component analysis, Cronbach alphas and correlations with MOS-24, three subscales of the SIP, demographic, and clinical measures. Results-The a priori expected subdivision of the questionnaire in two subscales, one measuring the consequences of double vision and decreased visual acuity on visual functioning, and one measuring the psychosocial consequences of a changed appearance, was confirmed in the principal component analysis. Both scales had a good reliability and high face validity. Correlations with other measures supported construct validity. Mean scores (range 0-100) were 54.7 (SD 22.8) for visual functioning and 60.1 (24.8) for appearance (higher score = better health). Conclusion-The GO-QOL is a promising tool to measure disease specific aspects of quality of life in patients with GO and provides additional information to traditional physiological or biological measures of health status. (Br J Ophthalmol 1998;82:773-779)

TSH-R antibody levels correlate directly with clinical features of Graves' ophthalmopathy. The results support the hypothesis of a pathogenetic role of TSH-R antibodies and the TSH-R in the orbit of Graves' ophthalmopathy patients.

As a general guideline, one could consider a mean change of at least 6 points on one or both subscales an important change in daily functioning for patients. For more invasive therapies, a change of at least 10 points is recommended as a minimal clinically important difference.

To assess the impact of Graves' ophthalmopathy (GO) on quality of life using a general questionnaire, we performed a descriptive study on consecutive ophthalmopathy patients. We included 70 consecutive, euthyroid patients (age >18 years, 50 females, 20 males, mean +/- SD age 53 +/- 13 years) with varying degrees of severity of GO. General quality of life was assessed with the brief survey (24 questions) from the Medical Outcomes Study (MOS-24), and three subscales of the Sickness Impact Profile (SIP). In comparison with a large published reference group, low scores on the MOS-24 were found. Mean +/- SD scores (difference from reference group) were: physical functioning 58 +/- 31 (-28), role functioning 72 +/- 40 (-15), social functioning 78 +/- 25 (-14), mental health 67 +/- 18 (-10), health perceptions 46 +/- 22 (-26), and bodily pain 68 +/- 28 (-6). MOS-24 and SIP scores did not correlate with the duration, severity, or activity of the ophthalmopathy. In conclusion, we have shown that mild to moderately severe GO has a large influence on the quality of life of these patients. The negative impact on well-being seems not to be related to the usual clinical assessment. These results underscore the need for quality-of-life measurements in clinical trials.