Systemic Sclerosis Quality of Life Questionnaire (SScQoL): translation into Turkish and assessing its psychometric properties.

BACKGROUND: Systemic sclerosis (SSc) is a chronic autoimmune disease that affects the connective tissues and leads to physical, emotional, and social challenges for patients. Evaluating health-related quality of life (HRQoL) with a disease-specific tool may be preferable for improving patient care and treatment outcomes. The aim of this study was to translate the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) into Turkish and to investigate its psychometric properties. METHODS: Eighty-six patients with SSc (mean age 51.8 ± 11.7 years, 80 females) participated in the study. Convergent validity was explored by correlation analyses between Turkish SScQoL and Short-Form 36 (SF-36), European Quality of Life Survey-5 Dimensions (EQ-5D), EQ-5D Visual Analog Scale (EQ-VAS), and Scleroderma Health Assessment Questionnaire (SHAQ). Cronbach's alpha was calculated to test internal consistency. Turkish SScQoL was readministered after 7-14 days to fifty-eight patients for determining test re-test reliability. Intraclass correlation coefficients in 95% confidence interval (ICCs [95%CI]) were calculated to examine the agreement between two assessments. Values greater than 15% and an absolute skewness value < 1 were recognized as the presence of a floor or ceiling effect. RESULTS: SScQoL correlated significantly with SF-36 subdomains (r = -0.347 to -0.618, p < 0.01), EQ-5D (r = -0.535, p < 0.01), EQ-VAS (r = -0.636, p < 0.01), and SHAQ global score (r = 0.521, p < 0.01). SScQoL demonstrated excellent internal consistency (Cronbach's alpha = 0.917), and good to excellent test-retest reliability (ICC [95%CI] = 0.85 [0.76-0.91]). No floor/ceiling effects were observed. CONCLUSION: The Turkish version of SScQoL seems to have adequate psychometric properties and can be used to evaluate HRQoL in clinical and research settings. Key points • Turkish version of SScQoL is a valid and reliable tool for measuring health-related quality of life of patients with systemic sclerosis. • SScQoL is the only diseases-specific quality of life measurement for systemic sclerosis available in Turkish. • Patients with limited and diffuse SSc seem to be similar in terms of self-reported health-related quality of life.

Assessing dyspnea-related kinesiophobia in patients with systemic sclerosis (SSc): validity and reliability of Turkish Breathlessness Beliefs Questionnaire for SSc.

INTRODUCTION/OBJECTIVE: The respiratory system is often affected by systemic sclerosis (SSc), a connective tissue disease characterized by fibrosis, vasculopathy, and inflammation. As a result, especially exertional dyspnea may occur in SSc patients. Evaluation of attitudes towards dyspnea is important in terms of preventing negative consequences such as kinesiophobia. However, no validated tool is available for assessing dyspnea-related kinesiophobia for patients with SSc. The aim of the present study was to perform the Turkish validation of the Breathlessness Beliefs Questionnaire for SSc (BBQ-SSc), which was adapted from the Tampa Kinesiophobia Scale, and to investigate its relationships with physical and clinical characteristics. METHOD: Fifty patients with SSc (47 females) were included in the study. The patients were evaluated regarding pulmonary function tests, respiratory muscle strength, patient-reported dyspnea, quality of life related to respiratory problems, mood, and fatigue. The patients were re-evaluated 1 week later for the test-retest reliability of the BBQ-SSc. RESULTS: Internal consistency (Cronbach's alpha: 0.862) and test-retest validity (ICC: 0.831; 95% CI: 0.702-0.907) of the 12-item Turkish BBQ-SSc were found to be good. Principal component analysis confirmed the two-dimensional structure of the questionnaire. The scores of the questionnaire were associated with duration of illness, patient-reported dyspnea, quality of life related to respiratory problems, mood, and fatigue (p < 0.05). CONCLUSIONS: According to our results, the 12-item Turkish BBQ-SSc is a reliable and valid tool to assess dyspnea-related kinesiophobia in SSc patients. Key Points • There are no structured tools available for assessing dyspnea-related kinesiophobia in patients with systemic sclerosis (SSc) • The 12-item Turkish Breathlessness Beliefs Questionnaire for SSc (BBQ-SSc) is a reliable and valid tool to assess dyspnea-related kinesiophobia in SSc patients.

Investigating performance-based hand functions in patients with systemic sclerosis.

OBJECTIVE: Systemic sclerosis (SSc) is a connective tissue disorder characterized by collagen deposits in various organs. Skin involvement is one of the most common symptoms and along with vascular damage, may deteriorate hand functions. However, the status of hand functions has generally been investigated using patient-reported measures in patients with SSc. The aim of the present study was to investigate performance-based hand functions in patients with SSc using the Sollerman Hand Function Test (SHFT). METHODS: A total of 39 patients with SSc (33 females) were included in the study. Twenty-four patients were classified as limited cutaneous SSc (lcSSc), while 15 patients were classified as diffuse cutaneous SSc (dcSSc). Hand-related physical characteristics were evaluated using the Modified Hand Mobility in Scleroderma Test, grip strength, and pinch strengths. The Duruoz Hand Index (Cochin Hand Functional Disability Scale), Disability of Arm, Shoulder, and Hand Questionnaire, Health Assessment Questionnaire, and Scleroderma Health Assessment Questionnaire were used as patient-reported measures. Performance-based hand functions were evaluated using SHFT. RESULTS: No significant differences were observed between lcSSc and dcSSc subtypes regarding performance-based and patient-reported hand functions (p > 0.05). SHFT scores significantly correlated with hand-related physical characteristics and patient-reported hand functions (p < 0.05). The highest correlation was determined between SHFT and the Duruoz Hand Index (rho: -0.652, p < 0.001). CONCLUSION: According to our results, performance-based hand functions seem not to be affected by disease subtype. Performance-based hand functions may partially be captured by the patient-reported outcomes, especially the Duruoz Hand Index, in patients with SSc.