Introduction: Thyroid Eye Disease (TED) affects quality of life causing a negative impact on psychosocial life. Previous findings identifed the phenomenon of an altered sense of identity with associated lowered-self esteem, social withdrawal and isolation. How this altered identity influences interactions with Healthcare Professionals (HCPs) has not been investigated.
Study aim: To explore the nature of interactions between HCPs and patients with TED.
Method: We conducted a qualitative study involving individual, tape-recorded, semi-structured interviews with 20 Caucasian TED patients (4 male, 16 female, age range 2890 years, median 54 years). Thematic content analysis, using an analytical framework identified key areas.
Results: Interactions were often difficult for patients due to uncertainty surrounding diagnosis, prognosis and treatment. If they could have told me the chances of success, what the percentage was, but nobody seemed to be able to give me answers on that. Ambiguity in consultations led to patient frustration, I come away from clinic feeling worse, I dont feel anything productive has come of it.
Information and active involvement in the decision-making process was reassuring and empowering for patients The fact that somebody has explained something to you makes you feel more involved and not just …one of the cattle. HCPs underestimation of the psychosocial impact of TED conflicted with patients perceptions causing resentment He should have realised how I was going to feel. In contrast, empathetic consultation skills by HCPs validated patients experiences It was like a breath of fresh air, he understood how I felt. Contradicting experiences reflected both the nature of the HCP interaction and the ability of the patient to adjust to their condition.
Conclusion: The combination of lowered self-esteem with uncertainty surrounding the clinical process can result in patients being less actively involved in their care. Empathic consultations and effective communication impacted positively on the provision of patient-centred care.