Quality of Life and Psychosocial Well-being in Thyroid Eye Disease in Japan: Pre-teprotumumab National Survey

Abstract 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 (HRQOL) and psychological wellbeing among TED patients using standardized quantitative instruments and discuss Patient Reported Outcome (PRO) of Japanese patients compared to US, European, and Asians. Methods This is the first Japanese nationwide cross-sectional survey which shows natural history of QOL prior to the launch of teprotumumab outside of US. Fifty-six TED patients were recruited and answered questionnaires including Short-Form 12-Item Survey-version 2 scores (SF-12v2), Graves’ ophthalmopathy quality of life questionnaire (GO-QOL), Hospital Anxiety Depression Scale (HADS), and Client Satisfaction Questionnaire-8 (CSQ-8). Disease activity and severity were classified based on European Group on Graves’ Orbitopathy (EUGOGO) criteria. Results While SF-12v2 physical component summary (PCS) and mental component summary (MCS) scores were similar to population norms, SF-12v2 role component summary (RCS) scores (mean = 39.5) were notably below national normal. GO-QOL appearance-related/psychosocial scores were impaired as well as SF-12v2, and particularly lower in active disease (52.5 vs. 73.3; P = 0.004). 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. Conclusions TED imposes significant psychosocial burden, particularly in active disease and among those with symptoms with structure changes. Psychosocial support and targeted symptom control may improve patient-centered outcomes in TED.