Endocrine Abstracts

Objective: Altered appearance and changed visual function characterize thyroid associated orbitopathy (TAO). TAO affects face and eyes and influences social function. It is well documented that thyroid disease influences the patient’s quality of life negatively and TAO aggravates the situation. Recently, attention has been directed towards the impact of the patient’s body image and studies show how body image dissatisfaction is a significant psychosocial complication. Although TAO is a disfiguring disease the impact of change in body image on social function has not been investigated using qualitative methods. This study explores how patients with TAO experience the impact of a changed body image on their social relations and interpersonal behavior.

Methods: An ethnographic approach using interviews and participant observation. Thirteen patients diagnosed with moderate to severe TAO and receiving treatment in a thyroid clinic were included. Grounded theory methodology was used to analyse data. The local ethics committee approved the study.

Results: The participants’ ability to maintain their social function was connected with changed body image. ‘Eyes out of control’ was the dominating experience, including 4 dimensions; deviating appearance, deviating visual function, deviating visual sensibility and deviating disease. TAO made it difficult to make eye contact with other people and use the eyes for communication. The participants witnessed how people stared at them, acted unpleasantly, avoided them, and misunderstood their facial expression. TAO made the participants change their social function with regard to reduced contact with others and everyday activities such as shopping, reading, driving and working.

Conclusion: TAO is a challenging disease, hard to treat and unpredictable, making it difficult for patients and others to understand the meaning of TAO. The findings of this study contribute to clarification of essential elements of living with TAO and development of guidelines for supporting and informing patients with TAO.