The following is a summary of “How patients experience thyroid eye disease,” published in the November 2023 issue of Opthalmology by Smith et al.

Thyroid Eye Disease (TED) is a debilitating autoimmune disease that can cause lasting vision problems and Quality of Life (QoL) issues. Researchers started a retrospective study to assess the impact of TED on patients across different stages of the condition.

They developed a 62-question survey to generate hypotheses to pinpoint crucial concerns in patients aged ≥18 years diagnosed with TED by physicians. The survey primarily delved into physical and emotional status and QoL experiences during the 2 months preceding the survey. Question-level data summaries were generated, and correlations between questions were evaluated using χ² analyses.

The results showed 443 respondents, aged 18 to >80 years old, were predominantly female (>90%) and mainly from the United States (>80%). The time since TED diagnosis varied from <1 year to >10 years. Participants provided over 500 free-form responses detailing their experiences living with TED. Physical signs/symptoms were reported by 307 out of 443 (69%) patients. Among those responding to QoL questions (N = 394), 13% reported symptom improvement, 19% reported worsening symptoms, and 65% reported no change 2 months before the survey. The most bothersome signs/symptoms included dry/gritty eyes, light sensitivity, bulging eyes, and pressure or pain behind the eyes. Patients under 60 were more likely to report symptomatic TED than older patients (P<0.0001), 394 respondents, 45% said feeling depressed and/or anxious, 44% expressed concern about their appearance, and 19% avoided public situations; 49% reported declines in confidence or general well-being, and 20% reported an inability to achieve goals. Activities limited by TED included reading, driving, and socializing. Hostile QoL measures were more common in patients with >5 symptoms, recent diagnosis, or age <60 years.

They concluded that TED significantly impacts patient QoL across all disease stages, necessitating increased healthcare professional awareness of patient experiences to enhance disease management.

Source: frontiersin.org/articles/10.3389/fendo.2023.1283374/full