The impact of thyroid eye disease upon patients' wellbeing: a qualitative analysis

Previous studies using quality of life (QoL) questionnaires have shown poor QoL in patients with thyroid eye disease (TED). However, predetermined questionnaires limit in-depth investigation of psychosocial and emotional effects of TED. A qualitative approach allows detailed exploration of patients' perceptions of wellbeing and can capture their lived experiences.

To explore the experience of living and coping with TED.

A qualitative study involving individual, tape-recorded, semistructured interviews with 25 participants with TED (20 female subjects, median age 54 years, range 28-90 years). Thematic content analysis identified themes, from which theoretical interpretations were formed.

Three key themes were identified: (1) development of an altered identity as a result of changes in appearance, abilities and roles due to physical consequences of TED. This was described in the context of life before and after TED; (2) creation of coping strategies including denial, social avoidance, adjustment and stoicism; (3) difficult interactions with healthcare practitioners due to uncertainty surrounding the diagnosis, prognosis and treatment choices, resulting in patients' disengagement, anger and frustration.

This qualitative study has identified the phenomenon of an altered identity due to direct consequences of TED that impact upon patients' wellbeing, coping strategies and interactions with healthcare professionals.