TED is a chronic autoimmune orbital inflammatory disease that occurs in approximately 50% of patients with Graves’ disease [25]. The pathogenesis of the disease is associated with circulating antibodies (TRAb) that activate proteins in the extraocular muscles and orbital fat, leading to fibroblast proliferation and glycosaminoglycan production. This results in orbital congestion, enlarged extraocular muscles and increased orbital fat volume, with typical effects of diplopia, eye exposure, orbital swelling and, at a later stage, fibrotic reaction [26].

In recent years, more attention has been given to the potential negative impact of TED on the patients´ quality of life (QoL) [27]. Thereby the goal of TED treatment has been increasingly focused not only toward visual function improvement, but giving equal relevance to appearance, and patients’ feelings.

Frequent symptoms of TED are burning, swelling, sensation of pressure behind the eyes and diplopia. Other symptoms of GO include ocular dryness, grittiness, photophobia, pain, redness, and vision impairment. The most severe, insidious, and alarming complication of GO is the dysthyroid optic neuropathy (DON) which may be associated with permanent visual loss. However, several conditions associated to TED, such as dry eye and exposure keratopathy, are frequently under-diagnosed but can induce severe detrimental effect on QoL and visual function [28, 29].

Increasing evidence demonstrated that patients with TED have a poorer quality of life than patients with other chronic conditions including diabetes, emphysema, heart failure, and even GD without GO. They also report difficulties in social relationships because of their proptosis and complain of social isolation because of their physical aspect [30].

Different studies proved that In patient with GD, whether or not with associated orbitopathy, antibodies binding to cerebral TSH-R (expressed in cortical and limbic areas) may play a role in the development of neuropsychiatric disorders, such as cognitive deficit and emotional impairment [31, 32].

Wickwar reported that people with GO have higher levels of anxiety and depression than people affected by other chronic diseases or facial disfigurements [33]. Schreckenberger et al. had previously carried out a cross-sectional study in patients with untreated Graves’ disease and healthy controls, correlating the level of anxiety and depression with findings on cerebral glucose metabolism assessed by PET fluorodeoxyglucose [34].

The first GO-specific questionnaire (GO-QOL) was developed in 1998 by Terwee et al. And revealed good correlations with disease severity and clinical activity [35]. The GO-QOL was recommended for use by the European group on Graves’ orbitopathy (EUGOGO) for the assessment of clinical response parameters in clinical trials [36].

The present cross-sectional post-treatment study was designed to correlate QoL and self-perception of well-being with the different clinical and surgical approaches recommended by EUGOGO. The aim is to determine whether there were differences between treatment options in determining patient perception of well-being and satisfaction with treatment received, and whether they would recommend the treatment they had experienced to a friend or family member with the same condition.

Patients of this cohort who received GCs infusion or surgical orbital decompression resulted generally unsatisfied after one year and in some cases, they asked further surgical adjustments for their aspect, despite remarkable improvement of the exophthalmos and no other signs of the disease occurred after first surgery.

GCs infusion and orbital decompression were the most frequent treatment modalities we have carried out in this cohort. The first one, although it is not an invasive approach, implies multiple intravenous infusions for 6 weeks, as a results it resulted uncomfortable for some patients. In addition, side effects related to steroid administration, such as weight increase, irritability, and insomnia, may contribute to worsen their perception of health state.

Surgical orbital decompression resulted very satisfactory procedure in about 60% of patients in this cohort, with less than 10% unsatisfied. Indeed, it is an invasive therapy which may led to not fully satisfy patients particularly when some complications occur such as de novo diplopia.

Furthermore, In the very first postoperative period swelling and inflammation, coupled with a possible transitory increase in anti-corporal response triggered by the surgery itself may fuel a transient period of frustration and less satisfaction as registered in this study which eventually resolves over the time. Overall the impact on quality of life and improvement of the daily life may be considered favorable.

Less invasive procedure, such as adnexal or extraocular muscle surgery, had a better outcome in term of self-perception and satisfaction in the early stage, although in some cases they required a second intervention to adjust an hypo-or hyper-correction, indicating that local anesthesia, short surgical time, minimal post swelling, short admission time are all factors which contribute to a better compliance of the patient than such major procedure as the decompression.

Research suggests that unrealistic expectations may lead to dissatisfaction after eye surgery. What an individual with TED expects from their treatment may therefore predict psychological adjustment after surgery [34]. Estcourt and colleagues [35] report that some patients have unrealistic expectations that surgery will enable them to return to the life they had before TED, which may predict psychological adjustment after decompression surgery however quantification of this phenomena has not yet been assessed.

From the perspective of patients, clinical measurements, such as extraocular muscle movement or the degree of proptosis, are of limited interest, or difficult to understand. Instead, patients usually consider to impaired physical and psychosocial issues in daily life. The difference between objective clinical measurements and patients’ experiences cannot be explained only by the severity of signs and symptoms but by individuals’ characteristics and the environment. Health-related quality of life is the most important indicator of successful treatment when the primary aim is to improve quality of life rather than to prolong life [36].

Most of this complications or clinical activity signs persistence are caused by the high variability and unpredictability of the Graves’ disease. Thereby, a clear explanation and discussion with patients, is warranted prior to any surgical treatments. Psychological evaluation of the individual affected by TED and their health state self-perception, is crucial and it was the main focus of this study.

The current approach for the management of TED patients is based on disease activity and severity, but often it does not correlate with the health status and well-being as perceived by the patients.

Confidence in the surgical team might be a key factor in determining patients’ perceived likelihood of surgical complications and their anxiety about the procedure.

The main limitation of this study is the lack of data archived: from 2010 to 2018, 250 patients underwent clinical or surgical approach for TED, but only few of these clinical medical records were properly archived, several data were lost and many patients for these reason wasn’t enrolled in the study group; moreover a great number of individuals refused to answer the questionnaire. As result only 52 patients were inquired, which is not representative of the entire sample. Additional bias is the not randomized sample of patients and the absence of a control group. As previously exposed, since self-perception in TED’s affected humans is altered, they cannot always report objectively their improvement.

Previous GO-specific quality of life studies has shown only a moderate correlation between QOL and disease severity and a low correlation in appearance subscales. This evidence accentuates the disparity between objective clinical assessment and subjective quality of life; hence, assessing both objective and subjective measurements may be a more suitable approach for TED treatment programs [37].

Overall, participants perceived improvements in their post-operative appearance, although there were mixed feelings about whether these outcomes had met expectations. After surgery, some expressed a desire to improve appearance further through additional surgical procedures (particularly patients who were unsatisfied with their post-operative appearance), whilst others preferred not to ‘gamble’ with their appearance. Participants reported feeling more confident during social interactions since having surgery along with improvements in their well-being.

Some participants had functional difficulties after surgery, such as blurred vision, but expected these to resolve over time, and some were disappointed with persistent double vision after surgery. Patients were similarly satisfied with therapy and QoL improved across several subscales when examined solely by treatment type. Eventually, patients were similarly satisfied with therapy and QoL improved across several subscales when examined solely by treatment type.

In this study we demonstrate that the majority of patients were satisfied with the treatment they received; patients who received GCs or orbital decompression were less satisfied, but this would be explained by the invasiveness of the procedure that led to unrealistic expectations [38]. This study highlights the importance of healthcare professionals eliciting and managing patients’ expectations, to optimize surgical outcomes.

Unfortunately, the small number of patients willing to contribute to the questionnaire and the lack of a control group, weaken the relevance of this study. To overcome confounding factors, further investigations might prospectively follow bigger sized treatment groups and assess the variables we have investigated.