PDF(Pubmed)
Abstract：
To determine the impact of thyroid eye disease (TED) on patients in various stages of the disease.
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.
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.
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.
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.
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.
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.
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.
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.
摘要：
■确定甲状腺眼病（TED）对处于疾病各个阶段的患者的影响。
■TED是一种使人衰弱且可能威胁视力的炎症性自身免疫性疾病，经常被误诊。在疾病的活跃期消退后，具有挑战性的生活质量（QoL）问题可能会持续很长时间。
■一项由62个问题组成的调查被设计为一种假设生成工具，以确定医生诊断为TED的≥18岁患者所面临的关键问题。问题主要集中在身体和情绪上，以及调查前2个月的QoL经历。个别问题的数据作为汇总统计数据。使用χ2分析确定问题之间的相关性。
■443名受访者年龄在18至>80岁之间；>90%为女性，80%来自美国。自TED诊断以来的时间范围为<1年至>10年。参与者提供了超过500份自由形式的回复，描述了与TED一起生活的经历。307/443（69％）患者出现了体征/症状。在回答QoL问题的人中(N=394)，53（13％）报告症状有所改善，73（19%）报告症状恶化，255（65%）报告在调查前2个月没有变化。最麻烦的体征/症状是眼睛干燥/砂砾，光敏感度,凸出的眼睛,眼睛后面的压力或疼痛。与老年患者相比，<60岁的受访者（p<0.0001）更有可能报告有症状的TED。在394名受访者中，179（45%）报告感到沮丧和/或焦虑，174（44％）表示担心他们的外表，和73（19％）避免公共情况；192（49％）报告信心或总体幸福感下降，78人(20%)报告无法实现目标。TED限制的活动包括阅读，驾驶,和社交。当患者报告经历>5种症状时，经历这些负面QoL测量的受访者比例更高，在过去的5年内被诊断出来,或<60岁。
■TED的身体表现会影响患者的QoL。医生和医疗保健专业人员必须更加熟悉这里描述的患者体验，以更好地帮助患者管理他们的疾病。
■TED是一种使人衰弱且可能威胁视力的炎症性自身免疫性疾病，经常被误诊。在疾病的活跃期消退后，具有挑战性的生活质量（QoL）问题可能会持续很长时间。
■一项由62个问题组成的调查被设计为一种假设生成工具，以确定医生诊断为TED的≥18岁患者所面临的关键问题。问题主要集中在身体和情绪上，以及调查前2个月的QoL经历。个别问题的数据作为汇总统计数据。使用χ2分析确定问题之间的相关性。
■443名受访者年龄在18至>80岁之间；>90%为女性，80%来自美国。自TED诊断以来的时间范围为<1年至>10年。参与者提供了超过500份自由形式的回复，描述了与TED一起生活的经历。307/443（69％）患者出现了体征/症状。在回答QoL问题的人中(N=394)，53（13％）报告症状有所改善，73（19%）报告症状恶化，255（65%）报告在调查前2个月没有变化。最麻烦的体征/症状是眼睛干燥/砂砾，光敏感度,凸出的眼睛,眼睛后面的压力或疼痛。与老年患者相比，<60岁的受访者（p<0.0001）更有可能报告有症状的TED。在394名受访者中，179（45%）报告感到沮丧和/或焦虑，174（44％）表示担心他们的外表，和73（19％）避免公共情况；192（49％）报告信心或总体幸福感下降，78人(20%)报告无法实现目标。TED限制的活动包括阅读，驾驶,和社交。当患者报告经历>5种症状时，经历这些负面QoL测量的受访者比例更高，在过去的5年内被诊断出来,或<60岁。
■TED的身体表现会影响患者的QoL。医生和医疗保健专业人员必须更加熟悉这里描述的患者体验，以更好地帮助患者管理他们的疾病。
