| 1. |
- Becker, Mike O., et al.
(författare)
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Development and validation of a patient-reported outcome measure for systemic sclerosis : the EULAR Systemic Sclerosis Impact of Disease (ScleroID) questionnaire
- 2022
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Ingår i: Annals of the Rheumatic Diseases. - : BMJ. - 1468-2060 .- 0003-4967. ; 81:4, s. 507-515
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: Patient-reported outcome measures (PROMs) are important for clinical practice and research. Given the high unmet need, our aim was to develop a comprehensive PROM for systemic sclerosis (SSc), jointly with patient experts. METHODS: This European Alliance of Associations for Rheumatology (EULAR)-endorsed project involved 11 European SSc centres. Relevant health dimensions were chosen and prioritised by patients. The resulting Systemic Sclerosis Impact of Disease (ScleroID) questionnaire was subsequently weighted and validated by Outcome Measures in Rheumatology criteria in an observational cohort study, cross-sectionally and longitudinally. As comparators, SSc-Health Assessment Questionnaire (HAQ), EuroQol Five Dimensional (EQ-5D), Short Form-36 (SF-36) were included. RESULTS: Initially, 17 health dimensions were selected and prioritised. The top 10 health dimensions were selected for the ScleroID questionnaire. Importantly, Raynaud's phenomenon, impaired hand function, pain and fatigue had the highest patient-reported disease impact. The validation cohort study included 472 patients with a baseline visit, from which 109 had a test-retest reliability visit and 113 had a follow-up visit (85% female, 38% diffuse SSc, mean age 58 years, mean disease duration 9 years). The total ScleroID score showed strong Pearson correlation coefficients with comparators (SSc-HAQ, 0.73; Patient's global assessment, Visual Analogue Scale 0.77; HAQ-Disability Index, 0.62; SF-36 physical score, -0.62; each p<0.001). The internal consistency was strong: Cronbach's alpha was 0.87, similar to SSc-HAQ (0.88) and higher than EQ-5D (0.77). The ScleroID had excellent reliability and good sensitivity to change, superior to all comparators (intraclass correlation coefficient 0.84; standardised response mean 0.57). CONCLUSIONS: We have developed and validated the EULAR ScleroID, which is a novel, brief, disease-specific, patient-derived, disease impact PROM, suitable for research and clinical use in SSc.
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| 2. |
- Mattsson, Malin, et al.
(författare)
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Validity and reliability of the Patient Health Questionnaire-8 in Swedish for individuals with systemic sclerosis
- 2020
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Ingår i: Rheumatology International. - : Springer Science and Business Media LLC. - 0172-8172 .- 1437-160X. ; 40:10, s. 1675-1687
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Tidskriftsartikel (refereegranskat)abstract
- Background: Depressive symptoms are common in rheumatic diseases and influence patients’ quality of life. The Patient Health Questionnaire-9 (PHQ-9), which assesses symptoms of depression, is valid in English in patients with systemic sclerosis (SSc). However, the measurement properties of the PHQ-8 (short version of the PHQ-9) have not been evaluated in Swedish patients with SSc. Objective: To investigate different aspects of validity and reliability of the PHQ-8 in Swedish (PHQ-8 Swe) for individuals with SSc. Methods: A total of 101 patients with SSc participated. Content validity was evaluated via interviews of 11 patients and 10 health professionals. Construct validity, internal consistency test–retest reliability, and floor/ceiling effects were evaluated in 90 patients. Results: Content validity was satisfactory, but some linguistic adjustments were made. Confirmatory factor analysis supported a better fit for a two-factor structure. Moderate-to-strong correlations were found between the PHQ-8 Swe and scleroderma HAQ including VAS (rs = 0.4–0.7); Multidimensional Assessment of Fatigue (rs = 0.7); RAND-36 subscales (rs = − 0.5 to − 0.8); and lung disease severity (Medsger scores) (rs = 0.4). There were weak correlations (rs = <0.4) between the PHQ-8 Swe and modified Rodnan skin score; and vascular, heart, and kidney disease severity. Cronbach’s alpha was 0.85, corrected item-to-total correlations were >0.40, and the ICC for the total score was 0.83. No floor/ceiling effects were found. Conclusion: The PHQ-8 Swe has satisfactory content validity and sufficient reliability in patients with in majority limited SSc. It is more strongly associated with self-reported disability, pain, disease interferences with daily activities, fatigue, and quality of life than with disease severity, except for a moderate association with lung severity.
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| 3. |
- Ståhl, Christian, et al.
(författare)
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Social insurance literacy: a scoping review on how to define and measure it
- 2021
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 43:12, s. 1776-1785
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Sickness insurance and workers? compensation systems decide on peoples? eligibility for benefits, and are commonly based on medical certificates and assessments of work ability. Systems differ in the extent to which they preserve clients? dignity and right to fair assessments. In this article, we define a new concept for studying interactions between individuals and systems: social insurance literacy, which concerns how well people understand the different procedures and regulations in social insurance systems, and how well systems communicate with clients in order to help them understand the system. Methods: The concept was defined through a scoping literature review of related concepts, a conceptual re-analysis in relation to the social insurance field, and a following workshop. Results: Five related concepts were reviewed for definitions and operationalizations: health literacy, financial/economic literacy, legal capability/ability, social security literacy, and insurance literacy. Conclusions: Social insurance literacy is defined as the extent to which individuals can obtain, understand and act on information in a social insurance system, related to the comprehensibility of the information provided by the system. This definition is rooted in theories from sociology, social medicine and public health. In the next step, a measure for the concept will be developed based on this review.
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| 4. |
- Wuttge, Dirk M., et al.
(författare)
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Validation of the Swedish version of PROMIS-29v2 and FACIT-Dyspnea Index in patients with systemic sclerosis
- 2023
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Ingår i: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 45:15, s. 2517-2525
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Tidskriftsartikel (refereegranskat)abstract
- Purpose To evaluate the reliability, internal consistency, and construct validity of the Swedish versions of PROMIS-29 and Functional Assessment of Chronic Illness Therapy-Dyspnea (FACIT-Dyspnea) instruments in patients with systemic sclerosis (SSc). Methods In a cross-sectional study, consecutive SSc patients completed a paper-based survey. Internal consistency was assessed using Cronbach's alpha. Test-retest reliability was tested employing weighted Kappa (K-w) and intra-class correlation coefficient (ICC). Construct validity was evaluated by hypotheses testing using RAND-36, MRC Dyspnea score, Scleroderma Health Assessment Questionnaire (SHAQ) and clinical measurements. Results Forty-nine patients (86% female; 73% limited cutaneous SSc) completed the survey. The mean disease duration was 11 years and mean SHAQ was 0.5. Internal consistency and test-retest reliability were good with the exception of PROMIS-29 anxiety. PROMIS-29, FACIT-Dyspnea, and Functional limitation showed strong correlations to corresponding RAND-36 domains (|r(s)|=0.67 to -0.85). Relevant PROMIS-29 domains, FACIT-Dyspnea and Functional limitation correlated strongly to SHAQ and VAS overall disease severity (|r(s)|=0.60 to -0.75). Ceiling effects (>15%) were found in six PROMIS-29 domains and in both FACIT-Dyspnea and Functional limitations. Four (4/5) hypotheses were confirmed. Conclusions PROMIS-29 and FACIT-Dyspnea meet the requirements for reliability and have adequate construct validity in Swedish patients with SSc.
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