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New research · Ophthalmology
Journal of the Endocrine Society · 2d
Cross-sectionalJournal of the Endocrine Society · 2026

Quality of life and psychosocial well-being in thyroid eye disease in Japan: pre-teprotumumab national survey.

Shun Emoto, Yoshito Bushita, Toshio Nagase … Yukiko Nishimura
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OphthalmologyCross-sectional

Active thyroid eye disease is linked to markedly worse appearance-related quality of life

Quality of life and psychosocial well-being in thyroid eye disease in Japan: pre-teprotumumab national survey.

Shun Emoto … Yukiko Nishimura
Journal of the Endocrine Society · 2026
Background

Thyroid eye disease (thyroid eye disease) causes functional and psychosocial morbidity, but little is known about the patient-experienced burden in Japan.

Purpose

To assess health-related quality of life (QOL) and psychological well-being among thyroid eye disease patients using standardized quantitative instruments and discuss patient-reported outcomes of patients in Japan compared to the United States, Europe, and Asia.

Methods

This is the first Japanese nationwide cross-sectional survey that shows a natural history of QOL prior to the launch of teprotumumab outside of the United States.

Results

in active disease, appearance-related quality of life was lower than in inactive disease

52.5score
Active disease
73.3score
Non-active disease
More results

While the SF-12v2 physical component summary and mental component summary scores were similar to population norms, SF-12v2 role component summary scores (mean = 39.5) were notably below the national normal.

More results

The presence of symptoms such as pain with eye movement, eyelid swelling, strabismus, upper eyelid retraction, and proptosis was significantly associated with lower role/social functioning and satisfaction with care.

“
Conclusion · 1 of 2

Thyroid eye disease imposes a significant psychosocial burden, particularly in active disease and among those with symptoms involving structure changes.

Conclusion · 2 of 2

Psychosocial support and targeted symptom control may improve patient-centered outcomes in thyroid eye disease.

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