Abstract #1407112: Assessment of the Thyroid Eye Disease Specific Graves’ Ophthalmopathy Quality of Life Questionnaire in Non-Inflammatory or Inactive Thyroid Eye Disease Patients

Abstract

Patients (pts) with inactive/non-inflammatory thyroid eye disease (TED) previously reported similar negative quality of life as those with active/inflammatory TED, using TED-specific Graves’ ophthalmopathy quality of life (GO-QOL) scores. Mean visual function and appearance scores of 58.6 and 62.3, respectively, indicated significant disease impact. Here we examined specific areas of quality of life affected by non-inflammatory TED. An online survey of pts with inactive TED, as assessed by pt healthcare provider, was conducted in January 2020. Questions from the GO-QOL evaluated TED impact on specific activities (reading, watching TV, hobby or pastime, driving, walking outdoors, moving around the house, and bicycling), appearance and social interactions on a 3-point scale: seriously or very much/a little/not at all limited, or not applicable. Caregiver assistance was also evaluated. 100 pts (47, 47% female) with inactive TED were identified (mean age 45.2 ± 7.6 yrs). Outside of individual symptoms, 28 (28%) reported that severe impact on quality of life was the major negative feature of TED. On specific GO-QOL items, watching TV and reading were the activities most affected, with 86 (86%) and 85 (85%) pts reporting some limitation, respectively, and 32 (32%) and 28 (28%) reporting serious limitation. 70 (70%) pts reported some difficulty driving, 59 (59%) reported some limitation walking outdoors, and 57 (57%) reported limitation with hobbies or pastimes. 58 (58%) reported hindrance to something they wanted to do in the past week. 77 (77%) pts felt like their appearance had changed because of TED with 11 (11%) reporting that their appearance had changed very much. 71 (71%) reported a negative influence on self-confidence with 25 (25%) reporting serious impact. 72 (72%) reported appearing less often in photos than before TED. 32 (32%) reported receiving caregiver (primarily partners) help for daily activities and 41% (13/32) of caregivers were extremely involved in communication with the pt’s healthcare provider. Among the tasks most necessitating aid from a caregiver, 69% (22/32) received help grocery shopping and cooking, 56% (18/32) received help with transportation, and 44% (14/32) received help with household tasks and general healthcare. This analysis indicates pts with inactive/non-inflammatory TED continue to feel the negative quality of life impact of TED after the acute/inflammatory presentation fades with many suffering from limitations of daily living activities. Pts also report that TED continues to affect their appearance and how they interact with people, with almost a third relying on caregiver help.