Background: 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.
Objective: To explore the experience of living and coping with TED.
Design And Patients: 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.
Results: 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.
Conclusion: 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.
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