How patients experience thyroid eye disease

Abstract

Objective: To determine the impact of thyroid eye disease (TED) on patients in various stages of the disease.

Background: TED is a debilitating and potentially sight-threatening inflammatory autoimmune disease that is frequently misdiagnosed. Challenging quality-of-life (QoL) issues can persist long after the active phase of disease has subsided.

Methods: A 62-question survey was designed as a hypothesis-generating instrument to identify key issues confronting patients ≥18 years old with physician-diagnosed TED. Questions focused primarily on physical and emotional status, and QoL experiences in the 2 months prior to the survey. Data for individual questions are presented as summary statistics. Correlations between questions were determined using χ² analyses.

Results: The 443 respondents were 18 to >80 years old; >90% female, and >80% from the United States. Time since TED diagnosis ranged from <1 year to >10 years. Participants provided >500 free-form responses describing experiences of living with TED. Physical signs/symptoms were experienced by 307/443 (69%) patients. Of those responding to the QoL questions (N = 394), 53 (13%) reported symptoms improving, 73 (19%) reported symptoms worsening, and 255 (65%) reported no change in the 2 months prior to the survey. The most bothersome signs/symptoms were dry/gritty eyes, light sensitivity, bulging eyes, and pressure or pain behind the eyes. Respondents <60 years were significantly (p < 0.0001) more likely to report symptomatic TED than older patients. Of 394 respondents, 179 (45%) reported feeling depressed and/or anxious, 174 (44%) reported concern about their appearance, and 73 (19%) avoided public situations; 192 (49%) reported declines in confidence or feelings of general well-being, and 78 (20%) reported an inability to achieve goals. Activities limited by TED included reading, driving, and socializing. The proportion of respondents experiencing these negative QoL measures was higher when patients reported experiencing >5 symptoms, had been diagnosed within the last 5 years, or were <60 years of age.

Conclusions: Physical 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 such as those described here to better help patients manage their disease.

Keywords: Graves’ orbitopathy; active disease; chronic disease; patient experience; patient survey; quality of life; thyroid eye disease; thyroid-associated ophthalmopathy.

Figure 1

Respondent disposition for analysis. QoL, quality of life; TED, thyroid eye disease.

Figure 2

Comparison of time periods for disease duration as measured by the time since symptom onset (“How long ago did you first experience symptoms of TED?”) and time since diagnosis (“How long ago were you diagnosed with TED?”). Fifty-eight individuals reported that their symptoms started before diagnosis, 20 reported symptom onset was after diagnosis, and 361 reported both symptom onset and diagnosis occurred within the same time window (4 respondents were not sure when their symptoms began). N = 443 responses. TED, thyroid eye disease.

Figure 3

(A) Current age of respondent compared with disease trajectory (worse, same, better during the 2 months prior to the survey); N = 379; p = 0.0009. (B) Time since diagnosis of TED compared with disease trajectory (worse, same, better during the 2 months prior to the survey); N = 381; p < 0.0001. (C) Disease phase (active/inactive/not sure) compared with disease trajectory (worse, same, better during the 2 months prior to the survey). N = 381; p < 0.0001. TED, thyroid eye disease.

Figure 4

(A) Number of symptoms in the last 2 months (grouped as no symptoms, 1-4 symptoms, or 5-12 symptoms) compared with current age (<60 years, >60 years). N = 323; p = 0.015. (B) Number of symptoms in the last 2 months compared with time since diagnosis (<5 years, 5-10 years, >10 years). N = 324; p = 0.0198. (C) Number of symptoms in the last 2 months compared with disease trajectory in the last 2 months. N = 316 (The number of respondents reporting the combination of no symptoms and disease getting worse was too small for statistical analysis. Therefore, responses to “1-4 symptoms” were compared with “5-12 symptoms”. N = 298; p = 0.0005).

Figure 5

QoL measures. (A) During the past 2 months, which of the following have you experienced because of TED? (Negative feelings) (Select all that apply); (B) During the past 2 months, which of the following have you experienced because of TED? (Declines) (Select all that apply); (C) During the past 2 months, which activities have been limited by TED? (Select all that apply). Data are presented as percentages of the 394 individuals who answered these questions. A total of 130/394 (33%) individuals reported “none of the above” to both questions (A) and (B) QoL, quality of life; TED, thyroid eye disease.

Figure 6

A higher proportion of individuals with ≥5 physical symptoms report reduced QoL compared with those with no or <5 symptoms. QoL measures (A) “No negative feelings” or “1 or more negative feelings”, (B) “No declines” or “1 or more declines”, (C) “No activities limited” or “1 or more activities limited by TED” compared with number of symptoms currently being experienced: “No symptoms”, “1-4 symptoms”, or “5-12 symptoms”. N = 324; p <0.0001. QoL, quality of life; TED, thyroid eye disease.

Figure 7

A higher proportion of individuals diagnosed with TED for <5 years report reduced QoL compared with those with longer duration TED. QoL measures (A) “No negative feelings” or “1 or more negative feelings”, (B) “No declines” or “1 or more declines”, (C) “No activities limited” or “1 or more activities limited by TED” compared with time since diagnosis: “<5 years since diagnosis” or “>5 years since diagnosis”. N = 394; p < 0.0001. QoL, quality of life; TED, thyroid eye disease.

Figure 8

A higher proportion of individuals <60 years old report reduced QoL compared with those >60 years old. QoL measures (A) “No negative feelings” or “1 or more negative feelings”, (B) “No declines” or “1 or more declines”, (C) “No activities limited” or “1 or more activities limited by TED” compared with age of respondent: “<60 years” or “>60 years”. N = 392; p < 0.0001 for feelings and declines and p = 0.0013 for limitations in activity. QoL, quality of life; TED, thyroid eye disease.

Figure 9

Individuals experiencing double vision or bulging eyes report proportionately more negative feelings and declines compared with individuals with dry/gritty eyes. Specific symptoms of TED (double vision, bulging eyes, or dry/gritty eyes) compared with (A) negative feelings or (B) declines currently being experienced by respondents. QoL measures are combined as “no negative feelings” and “1 or more negative feelings” or declines. When all 3 symptoms are compared with “no negative feelings” or “1 or more negative feelings”, χ² (2) = 6.609; p = 0.0367. When the 3 symptom groups are compared with “no declines” or “1 or more declines” χ² (2) = 12.24; p = 0.0022. There were no significant correlations between the 3 symptoms and limitations of activities. Specific significant correlations are bulging eyes to dry/gritty eye and “1 or more negative feelings” 113/143 (79%) to 143/215 (67%), respectively (p = 0.0102); bulging eyes to dry/gritty eyes to “1 or more declines” 102/143 (71%) to 121/215 (56%), respectively (p = 0.004); double vision to dry/gritty eye and “1 or more declines” 83/115 (72%) and 121/215 (56%), respectively (p = 0.0046). QoL, quality of life; TED, thyroid eye disease.