The impact of thyroid eye disease (TED) upon patients' wellbeing - a qualitative study

Stephanie Estcourt, Senior Research Nurse from The Royal Devon and Exeter NHS Foundation Trust

The aim of this study was to explore patients' experiences of living and coping with TED. We conducted a qualitative study involving tape-recorded interviews with 20 participants who had TED (4 male, 16 female, age range 28-90 years, median 54 years). Transcripts from the interviews were analysed and identified three main themes.

The development of an altered identity, in response to the changes in physical abilities, appearance and social functions caused by the effects of TED. This often resulted in a loss of confidence and increased social isolation. Experiences were described in the context of a 'before and after' the disease, and were often associated with grief and periods of mourning and depression. 'It's almost as if that was another life.' A variety of coping strategies were identified, including the use of ironic humour, denial and social withdrawal. Many participants expressed a longing to tell their 'story' of events and experiences and all acknowledged there was little choice but to carry on with their everyday lives. 'I just get on and live with it really. I'll survive.' The development of an altered identity influenced interactions with healthcare professionals (HCPs). Participants found that the combination of uncertainty surrounding the diagnosis and treatment of TED, together with the desire to deny what was happening, often resulted in anger and frustration. 'I come away from clinic feeling worse, I don't feel anything productive has come of it.' Whilst being actively involved in treatment decisions reduced feelings of anxiety and frustration and left them feeling that they could engage more fully in their treatments.

This qualitative study has identified the concept of an altered identity amongst patients with TED, which is associated with lowered self-esteem and social withdrawal. The study recognizes there is often a difference between healthcare professionals' assessment of the disease and that of the patients', which can lead to anxiety and frustration. Recommendations include more patient centred evaluation of disease severity and impact. The provision of innovative sources of support such as the development of telephone and email support networks. The development of multidisciplinary combined endocrine and ophthalmology clinics that can meet the complex and diverse needs of patients with TED.