This review identified 20 original studies that had a goal of assessing how thyroid eye disease (TED) affects patients’ quality of life (QOL). The review authors also wanted to examine how suboptimal quality of care affects QOL in TED patients.
Quality of Life Conclusions
The 20 studies assessed QOL in various methods.
Some used general health-related questionnaires, and those consistently demonstrated a poor QOL for TED patients. They also showed increased anxiety and depression.
One study used a vision-specific QOL questionnaire, and it showed a moderately impaired QOL in TED patients; QOL was worse in patients with diplopia.
Other studies used disease-specific QOL questionnaires; 3 TED-specific questionnaires have been developed, including the Graves’ ophthalmopathy-QOL (GO-QOL), which has been validated in its original language (Dutch). The review authors conclude that a “disease-specific QOL questionnaire could be invaluable in clinical research studies for providing information, additional to traditional clinical measures of TED.”
Impact of Quality of Care on QOL
Because the effect of quality of care on TED patients’ QOL is not discussed as much, this review wanted to examine this more carefully.
The review authors found several surveys of TED patients and healthcare professionals. One from the United Kingdom in particular showed delayed diagnosis, variability in access to specialized centers of care, variability of access to appropriate treatments, and low patient satisfaction with treatment. This delay in diagnosis—and delay in referral to a specialized TED clinic—has an impact on QOL.
Several of the studies say that TED patients have negative experiences with healthcare professionals. As the review authors write, “An important cause of this negative experience is the disparity between healthcare professionals’ assessment of severity of TED and patients’ perception of impact of the disease.”
In October 2009, the Amsterdam Declaration was made to enhance QOL in patients with TED by improving their quality of care. It has 5-year targets that should help raise awareness, establish referral and care pathways, lead to more timely treatment, and promote research. Combined, this should improve quality of care.
Commentary by Christian Nasr MD
GO can be very frustrating to patients. Specialists can be busy looking after the hyperthyroidism and not pay much attention to GO; or they may focus on organic and functional issues like discomfort, pain, or diplopia and not pay enough attention to the impact of GO on the patient’s social, professional, or emotional well-being.
In this review, not only did the authors evaluate studies of the effects of GO on patients’ quality of life but they also looked at how scientifically and accurately those studies were done.