成人B站猎奇版

Several recent studies have established that the physical manifestations of thyroid eye disease (TED) and their negative effects on mental health lead to substantial decreases in the patient鈥檚 quality of life (QoL). With this in mind, researchers from the U.S., U.K., and Denmark conducted an online survey to gather further evidence on the current experiences, perceptions, and QoL issues among people living with TED.¹

The authors concluded in their study, which was recently published in Frontiers in Endocrinology, that 鈥減hysical manifestations of TED impact QoL for patients through all phases of the disease. It is essential that physicians and healthcare professionals become more familiar with patient experiences . . . to better help patients manage their disease.鈥�¹

Tracking the patient experience

The study, exploratory and hypothesis-generating by design, used an online, 62-question survey covering key QoL issues facing adult patients with physician-diagnosed TED. Questions, mainly pertaining to physical and emotional status, captured patient experiences occurring within the 2 months prior to survey participation; this time frame was selected with the intention of minimizing recall bias.

The survey included free-form questions that enabled respondents to describe, in their own words, their experiences living with TED. The authors noted that hardly any prior surveys included in-depth interviews as a way to gather information on patients鈥� level of well-being.

The 443 people who responded to the survey were 18 to >80 years old, with 52% being between the ages of 50 and 69 years; 91% were female, 82% were from the U.S., and 83% self-reported as White or Caucasian. Time since TED diagnosis to survey participation ranged from <1 year to >10 years.

鈥淥ur findings are consistent with previous studies reporting delays in receiving the correct diagnosis of TED, ranging from 2 to 16 months, with eye-related symptoms developing well before the initial physician visit,鈥� the researchers pointed out.¹

An 鈥榰nderrecognized long-term burden鈥�

Roughly 7 out of 10 individuals (69%) indicated that they were currently experiencing physical signs and symptoms of TED, even though only 24% reported being in the active phase, in which the condition is continuing to change or getting worse. 鈥淭his finding, like earlier observations, highlights the underrecognized long-term burden of TED,鈥� the authors remarked.¹

Among the 394 individuals who responded to the QoL questions, 13% indicated that their symptoms were improving, 19% reported that their symptoms were worsening, and 65% indicated no change within the 2 months prior to their participating in the survey. 

With regard to the question on specific ocular signs and symptoms, to which 329 people responded, the most bothersome were reported as:

• dry/gritty eyes (65%)
• light sensitivity (56%)
• bulging eyes (43%)
• pressure or pain behind the eyes (42%)
• tearing (41%)
• redness (39%)
• double vision (35%)
• eyelid swelling (33%)
• blurred/cloudy vision or vision loss (32%)

Inability to close the eyelid, eyes that aim in different directions, color vision loss, and 鈥渙ther鈥� signs and symptoms were considered most bothersome in 鈮�21% of respondents.

Several important correlations are reported

Individuals <60 years of age were significantly more likely to report symptomatic TED compared to individuals >60 years old (P<.0001). The authors commented in their report that no major differences in responses by sex were apparent (P=.433). That said, the percentage of males participating in the study was very low (8%).

鈥淐linically meaningful statistical analyses based on country, race, and ethnicity were not possible because of inadequate numbers of respondents from countries outside the United States and races other than White/Caucasian,鈥� the researchers explained.¹

Time from the diagnosis of TED to survey participation, as well as time from the development of TED signs and symptoms to survey participation, both correlated with currently experiencing symptoms (P<.0001 and P=.0002, respectively), phase of disease (P<.0001 for both associations), and disease trajectory (P<.0001 for both associations). 

For some patients, negative emotions persist

Among the 394 people responding to the QoL questions, 45% felt depressed and/or anxious, 44% were concerned about their appearance, and 19% avoided public situations. In addition, 49% reported declines in confidence or feelings of general well-being, and 20% said they had trouble reaching certain goals.

Some of the specific activities hindered by TED included reading (45%), driving (28%), socializing (23%), and working (16%). The percentage of individuals reporting these negative QoL measures was significantly increased when they experienced >5 symptoms, had been diagnosed within the previous 5 years, or were <60 years of age. 

Higher rates of individuals with bulging eyes reported negative feelings compared to those with dry/gritty eyes (79% versus 67%; P=.0102). A similar trend for bulging eyes versus dry/gritty eyes was apparent for patients reporting 1 or more declines in well-being, confidence, or ability to achieve goals (71% versus 56%; P=.004). A significantly higher percentage of individuals with double vision (72%) reported 1 or more declines compared to those with dry/gritty eyes (56%; P=.0046). 

Participants were able to provide free-form narrative responses in order to describe their experiences living with TED. Here鈥檚 a representative example: 鈥淭his is a very difficult disease that causes tremendous damage to one鈥檚 health, ability to be independent, and psychologic well-being. As is the case with other autoimmune diseases, it is unpredictable, triggers other significant health problems, and is always with you.鈥�¹

Where the study fell short

The survey鈥檚 dependence on individuals self-reporting themselves as adults with a physician-confirmed diagnosis of TED was a major study limitation. 

Other methodologic concessions included the survey鈥檚 length, which could have been a burden for patients with serious visual impairments; the survey being available only in English; and the potential for limited internet access for prospective respondents. 鈥淪ome questions required a respondent to have sufficient knowledge of TED to answer properly,鈥� the authors added.¹

Understanding the patient鈥檚 journey

QoL issues could be considered just as valid as functional treatment outcomes when physicians discuss TED with their patients, the authors remarked. Some experts suggest, the authors continued, that QoL assessments should be integrated into routine clinical care and should be considered more in decisions about treatment, such as surgery. 

The authors also suggested that patients perceive that 鈥渟ome physicians lack an awareness of TED and fail to recognize the signs, symptoms, and negative impact of this disease on QoL. These shortcomings likely underlie, at least in part, the unmet needs of patients with this disfiguring and potentially sight-threatening disease.鈥�¹

Persistent, bothersome TED signs and symptoms negatively affect daily-life activities, irrespective of disease duration. Because of this, physicians and other healthcare professionals who manage patients living with TED should become more aware of patient experiences, the authors commented.

鈥淩esults from our survey,鈥� they concluded, 鈥渟hould invigorate the importance of long-term follow-up and management of patients.鈥�¹

Published: September 26, 2024