Endocrine Abstracts

Background: Thyroid Eye Disease (TED) is known to affect vision and appearance. Although the signs and symptoms are well documented, little research has been done to establish patients’ experience of their symptoms.

Aim: To document patients’ descriptions of TED symptoms using qualitative research methods.

Methods: 15 patients were recruited from a hospital TED clinic. Patients with a range of disease severity were sampled. Interviews were conducted using open and topic-lead questioning methods. The same researcher conducted all interviews. Interviews were recorded on audio- tape and transcribed. Emerging themes were provisionally coded, and then refined using an iterative process. Counting of descriptive categories was then performed. Local Ethical Committee approval was obtained before commencing the study.

Results: Patients’ descriptions of disease symptoms were broader than those traditionally recognised by clinicians. Symptoms relating to sensitivity to light, psychological effects of changed facial appearance and limitation of activities were particularly prominent.

Conclusions: Patients with TED experience a wide range of symptoms, many of which have not previously been well documented. Symptoms that patients are less likely to volunteer should be specifically enquired about. It should be appreciated that TED has a major impact on patients’ lives.