Dataset Information

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

ABSTRACT:

Purpose

Current 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.

Methods

This 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.

Results

After 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).

Conclusions

The 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 relevance

QoL assessment is important for holistic management of TED patients.

SUBMITTER: Wong MHY

PROVIDER: S-EPMC6166898 | biostudies-literature | 2018 Sep

REPOSITORIES: biostudies-literature

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Publications

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

Wong Melissa H Y MHY Fenwick Eva E Aw Ai Tee AT Lamoureux Ecosse L EL Seah Lay Leng LL

Translational vision science & technology 20180901 5

<h4>Purpose</h4>Current 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.<h4>Methods</h4>This cross-sectional study was conducted at the Singapore National Eye Centre between 2012 and 2015. In Phase 1, ...[more]

PMID: 30279999

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Project description:IntroductionThyroid eye disease (TED) is an autoimmune condition producing ocular pain, dysmotility, and ocular structure and function changes. As disease activity changes, redness, swelling, and pain can improve, but eye comfort, appearance, and motility alterations often persist. There are limited data on chronic TED patient-reported outcomes. This study examined chronic US TED patient-reported symptoms and quality of life (QOL).MethodsExisting data from an online survey regarding chronic TED signs/symptoms and patient QOL were retrospectively examined. The Graves' Ophthalmopathy QOL instrument (GO-QOL; 0-100, 100 = highest QOL) evaluated overall, appearance, and vision-related QOL. Influencing factors were examined by stratifying patients into low (overall QOL ≤ 50), moderate (> 50 and < 75), and high (≥ 75) QOL categories.ResultsOne hundred patients (47 women, 81 Caucasian, 45.2 ± 7.6 years) were included. The duration of inactive TED was 3.0 ± 4.6 years and total duration of TED was 5.8 ± 5.9 years. Patients reported an average of 20 doctor visits/year and high prevalence of anxiety (34%) and depression (28%). Prior TED treatments for the polled population included systemic corticosteroids during active TED (25%), orbital radiation (5%), and surgery (25%). The overall GO-QOL score was 60.5 ± 21.8 (vision-related: 58.6 ± 24.0, appearance-related: 62.3 ± 25.1). Patients with low QOL more frequently reported hypothyroidism, anxiety, and a larger number of chronic TED signs/symptoms (average: 4.2). Compared to high QOL patients, low QOL patients had more pain (39% vs. 13%), blurry vision (30% vs. 17%), and diplopia (27% vs. 3%, all p ≤ 0.025). Additionally, the low QOL group more often had TED-specific surgical history (45% vs. 10%, p = 0.002), more often reported disability/unemployment (21% vs. 3%, p = 0.055), and had a higher number of doctor visits (40 vs. 5 visits/person/year, p < 0.001).ConclusionTED severely impacts patient QOL, despite becoming stable and chronic. Patients reported vision and appearance impairment and psychosocial impact long after acute TED had subsided.

Project description:BackgroundMeasuring accurate and reliable scores of quality of life in patients with ankylosing spondylitis (AS) is important in both decision-making and treatment planning for the disease. Questionnaire, The ankylosing spondylitis quality of life (ASQoL), is one of the representative tools for assessing how seriously AS patients view their disease severity, activity, as well as their overall health. To make these types of questionnaires readable and understandable, local language translation of surveys should be required. A Korean version of the ASQoL questionnaire has accordingly been developed. This study assessed the Korean version of the ASQoL survey to evaluate the reliability and validity of it.MethodsTranslation and reverse translation of the English ASQoL survey were conducted. A total of 120 consecutive AS patients received a mail including the Korean-translated 36-Item Short Form Survey (SF-36), the ASQoL survey, and the visual analog scale (pain). The coefficient of intraclass correlation and Cronbach's alpha were computed, and factor analysis, as well as reliability assessments utilizing the kappa agreement statistics for each item, was undertaken. By analyzing the responses to SF-36 and ASQoL questionnaire utilizing Pearson's correlation coefficient, construct validity was calculated.ResultsFactor analysis was performed regarding pain, physical function, and mental function. The kappa statistic of agreement was larger than 0.6 for all items. The ASQoL questionnaire had adequate test and re-test reliability (0.814). Furthermore, Cronbach'sα, the internal consistency, was very good (0.877). The Korean-translated ASQoL questionnaire demonstrated a significantly strong correlation between the single domain and total SF-36 scores.ConclusionsThe Korean version of the ASQoL questionnaire showed acceptable properties of measurement and successful translation. Thus, it can be said that the questionnaire is appropriate for evaluating the outcomes of Korean patients with AS.

Dataset Information

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

Purpose

Methods

Results

Conclusions

Translational relevance

Publications

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

Similar Datasets

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