Related quality of life questionnaire specific to dysthyroid ophthalmopathy evaluated in a population of patients with Graves’ disease

Delfino, Laura; Zunino, A.; Sapia, Verónica; Croome, María del Carmen Silva; Ilera, Verónica; Gauna, Alicia

doi:10.1590/2359-3997000000252

Cited by 19 publications

(16 citation statements)

References 17 publications

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“…Therefore, ocular pain is likely a significant driver of QOL decrement in patients with TED. These findings are in agreement with prior studies which demonstrated that increasing disease activity [11,21,22,24,25] and ocular pain [10,11] significantly impair patient QOL. It should be noted that smaller, earlier published studies did not find a significant correlation between patient-perceived QOL and disease activity [20,29].…”

Section: Discussionsupporting

confidence: 93%

“…These findings suggest that overall disease severity, rather than any one severity measure, drive physician-perceived QOL impact in patients with TED. This conclusion is supported by patient-perceived QOL studies that show an increased QOL impact in patients with more severe disease [21][22][23][24][25]. On the other hand, eye muscle involvement, and the resulting sequelae (e.g., strabismus and diplopia), have been previously shown to specifically negatively influence QOL in TED patients [10-12, 22, 24].…”

Section: Discussionmentioning

confidence: 85%

“…To the best of our knowledge, this is the first study of its kind to include information from patients in the USA. Other QOL studies performed in Europe [9][10][11][17][18][19], Asia [20][21][22], Australia [23], and South America [24,25] have also shown a high impact of TED on patients' QOL.…”

Section: Discussionmentioning

confidence: 99%

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Physician-Perceived Impact of Thyroid Eye Disease on Patient Quality of Life in the United States

et al. 2020

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Introduction Thyroid eye disease (TED) is an autoimmune disease that causes retro-orbital inflammation and subsequent proptosis, corneal exposure, strabismus, and variable vision changes. European studies have shown that TED can severely impact quality of life (QOL), but little is known about the QOL of patients with TED in the USA. Given that patient QOL influences TED severity classifications and subsequent treatment, understanding physician-perceived patient QOL is extremely important. Methods This retrospective chart review (conducted in 2018) examined QOL in US patients with moderate-to-severe TED, as reported by treating physicians who regularly manage patients with TED (≥ 5 patients in prior 12 months). The physicians graded patients’ overall QOL (7-point Likert scale; 1 = “not at all impaired”, 7 = “extremely impaired”), assessing mental health, vision changes, and ocular structural signs/symptoms. Patient demographics and clinical findings were examined to understand the impact of disease presentation on physician-perceived QOL. Results Medical record data of 714 US patients with moderate-to-severe TED were provided by 181 physicians (73 endocrinologists, 108 ophthalmologists). Patients had a mean age of 49.4 (standard deviation [SD] 13.6) years, and 102 cases (14%) were severe. Anxiety and/or depression was reported in 36% of patients (an increase from the 18.9% prevalence reported for the USA in 2017 by the US National Institute of Mental Health; P < 0.001). The mean physician-reported QOL impact score was 4.1 (SD 1.5). Furthermore, 62 and 89% of patients with moderate and severe TED, respectively, had a high physician-perceived QOL impact (≥ 4). The higher QOL impact group had significantly higher rates of pain symptoms, visual disturbances (including diplopia), and orbito-facial structural changes. Higher disease activity and severity were associated with lower physician-perceived QOL. Conclusion Patients’ QOL, as evaluated by US physicians, is highly impacted by the activity and severity of TED. Additionally, mental health issues were more frequently reported by patients with TED than in the general US population. Ocular pain, strabismus, and diplopia appear to be main drivers of physician-perceived QOL impairment in this sample of US patients with TED.

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Section: Discussionsupporting

confidence: 93%

Section: Discussionmentioning

confidence: 85%

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Physician-Perceived Impact of Thyroid Eye Disease on Patient Quality of Life in the United States

et al. 2020

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“…Our results showed worse STED-QoL scores in patients with more severe disease as well as in those who had undergone surgery, although our results were unadjusted for confounders, such as age, sex, and sociodemographic and clinical factors. Similar findings have been reported by Delfino et al, 32 who used the Spanish translated version of the Go-QOL questionnaire in a cohort of 71 patients (56 GO patients and 15 controls) and found lower QOL scores in patients with more severe GO.…”

Section: Discussionsupporting

confidence: 89%

Development and Validation of the Singapore Thyroid Eye Disease Quality of Life Questionnaire

Wong

Fenwick

et al. 2018

Trans. Vis. Sci. Tech.

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PurposeCurrent instruments to assess thyroid eye disease (TED) quality of life (QoL) were not developed using modern psychometric theory and may not be applicable to Asian populations. Therefore, we developed a psychometrically robust questionnaire, the Singapore Thyroid Eye Disease Quality of Life questionnaire (STED-QoL), for assessing QoL in Asian patients.MethodsThis cross-sectional study was conducted at the Singapore National Eye Centre between 2012 and 2015. In Phase 1, content for the questionnaire was developed using qualitative methods. A total of 20 patients participated in three different focus groups. Thematic analysis was conducted to identify relevant themes from which 12 items, rated on a 5-point Likert-type scale, were generated. In Phase 2, the pilot instrument was administered to 59 TED patients and psychometric assessment of the STED-QoL was conducted using Rasch analysis.ResultsAfter collapsing categories from five to four and deleting two misfitting items, we generated a 10-item STED-QoL befitting the Rasch model. The scale showed good criterion validity, with scores decreasing as severity of TED worsened: mild (1.78 logits), moderate (0.27 logits), and severe (0.92 logits). A ‘Psychosocial' subscale also had adequate psychometric properties and psychosocial scores were significantly worse in those who underwent surgery for TED compared to those who had not (0.41 vs. 1.82 logits, P = 0.021).ConclusionsThe STED-QoL is a robust 10-item questionnaire specifically developed to measure the impact of TED on QoL and psychosocial well-being in an Asian population.Translational RelevanceQoL assessment is important for holistic management of TED patients.

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“…Multivariate analysis in our study showed EOM involvement, proptosis, and severity of eye disease predicted the visual functioning scores, however, only severity of eye disease predicted appearance scores and similar results were seen in German, Korean, and Spanish study. [ 8 21 22 ] Significant ceiling effects (21.4%) were seen in the visual functioning subscale, which suggests that patients had a maximum response to this scale. Similar ceiling effects were also seen in the German study (27%).…”

Section: Discussionmentioning

confidence: 99%

Assessing the quality of life in Indian Graves' orbitopathy patients and validation of Hindi version of GO-QOL questionnaire

Delampady

Reddy

Yadav

2020

Indian J Ophthalmol

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Purpose: To validate the GO-specific quality of life (QOL) questionnaire in Hindi language and to determine the correlation of scores (visual functioning and appearance) with disease severity and activity. Methods: We recruited 114 consecutive patients with GO attending Endocrinology Clinic at tertiary care center. Eye examination was performed, and QOL was assessed by questionnaire. Results: The questionnaire was validated by 50 GO patients and test-retest reliability was performed in 15 patients. Hindi version GO-QOL was administered in 49 GO patients. GO was mild in 51.0% and sight-threatening in only 2.0% of cases. Orbitopathy was clinically active in only 10 (20.4%) cases. The GO-QOL scores (median) for visual function and appearance were 81.3 and 62.5, respectively. Patients with moderate-to-severe and sight-threatening GO had significantly lower median appearance scores (56.3 vs. 68.5, P = 0.01) compared to mild disease but no difference in visual scores. Patients with active disease had significant lower median visual function (53.1 vs. 85.7, P = 0.009) and psychosocial (appearance) scores (40.6 vs. 68.8, P = 0.03) compared to inactive disease. On multivariate regression analysis of GO-QOL scores, extraocular eye movement involvement (EOM), proptosis, and severity of eye disease were significantly associated with visual functioning while appearance was significantly associated only with the severity of eye disease. Conclusion: GO-QOL scores were significantly reduced in patients with GO.

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Related quality of life questionnaire specific to dysthyroid ophthalmopathy evaluated in a population of patients with Graves’ disease

Cited by 19 publications

References 17 publications

Physician-Perceived Impact of Thyroid Eye Disease on Patient Quality of Life in the United States

Physician-Perceived Impact of Thyroid Eye Disease on Patient Quality of Life in the United States

Development and Validation of the Singapore Thyroid Eye Disease Quality of Life Questionnaire

Assessing the quality of life in Indian Graves' orbitopathy patients and validation of Hindi version of GO-QOL questionnaire

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