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

BACKGROUND

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

OBJECTIVE

To assess health-related quality of life (QOL) and psychological well-being among TED 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. Fifty-six TED patients were recruited and answered questionnaires including the Short-Form 12-Item Survey version 2 scores (SF-12v2), Graves' Ophthalmopathy Quality of Life Questionnaire (GO-QOL), Hospital Anxiety Depression Scale, and Client Satisfaction Questionnaire 8. Disease activity and severity were classified based on European Group on Graves' Orbitopathy criteria.

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. GO-QOL appearance-related/psychosocial scores were impaired as well as SF-12v2 and were particularly lower in active disease (52.5 vs 73.3; P = .004). 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

TED imposes a significant psychosocial burden, particularly in active disease and among those with symptoms involving structure changes. Psychosocial support and targeted symptom control may improve patient-centered outcomes in TED.