Abstract
Abstract: :
</ul></ul></ul> Purpose:While many objective measures have been used to assess the severity of Graves’ ophthalmopathy, these clinical parameters fail to quantify several of the most bothersome features of Graves’ ophthalmopathy, such as altered appearance and pain symptoms. An appropriate health–related quality of life (HRQL) instrument that incorporates these and other aspects of the disease would provide a potentially important endpoint for future studies of treatment for Graves’ ophthalmopathy. We sought to determine the potential suitability of the NEI–VFQ–25 for measuring HRQL in patients with Graves’ ophthalmopathy. Methods: The self–administered version of the NEI–VFQ–25 was given to 30 consecutive Graves’ ophthalmopathy patients. After completing the NEI–VFQ–25, subjects participated in a semi–structured interview that allowed them to provide feedback about the questionnaire. Both the NEI–VFQ–25 composite questionnaire and its 12 subscales were scored on a 0 to 100 scale, with 0 representing the worst possible score and 100 representing the best. Results: All 30 subjects completed the questionnaire and the semi–structured interview. The full range of Graves’ ophthalmopathy disease severity was represented in the patient sample. Participants demonstrated moderately impaired HRQL as measured by the NEI–VFQ–25, with mean composite score of 65.7. Subjects scored lowest on the Mental Health (mean ± SD 54.1 ± 30.6) and the Ocular Pain (60.6 ± 22.8) subscales. Subjects reported the least impairment on the Color Vision (89.6 ± 20.3) and Social Functioning (78.8 ± 26.7) subscales. Significant ceiling effects were observed for the Color Vision (73% of respondents at ceiling), Dependency (36.7%), Social Functioning (36.7%), and Role Difficulties (23.3%) subscales. 13% of respondents were at the floor of the Driving subscale. In the semi–structured interview, 22 of the 30 respondents perceived at least one deficiency in the NEI–VFQ–25. Ten subjects reported that the instrument did not inquire sufficiently into altered physical appearance. Insufficient pain–related items were cited by six patients. Participants also reported a lack of items about tearing, light sensitivity, self–consciousness, and impact of disease on work life. Conclusions: Although the NEI–VFQ–25 includes some items that are applicable to Graves’ ophthalmopathy patients, it shows significant ceiling effects in more than half of the subscales and it lacks items on issues that are important to Graves’ ophthalmopathy patients, such as altered appearance and ocular discomfort. Efforts to develop a HRQL instrument that adds Graves’ ophthalmopathy–specific items to relevant aspects of the NEI–VFQ–25 are warranted.
Keywords: quality of life • orbit