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The aim of this study was to examine the Turkish validity and reliability of the Hand scleroDerma lived Experience Scale (HAnDE Scale) Questionnaire in individuals with SSc.
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| Measure | Description | Time Frame |
|---|---|---|
| Hand ScleroDerma Lived Experience Scale (HAnDE Scale) Questionnaire | The scale consists of 18 items regarding the patient-reported status of hand function in individuals with SSc. Each response ranges from 0 to 4. 0 means 'completely disagree' and 4 means 'completely agree'. The higher the scale score, the worse the experience with the hand | Evaluations started immediately after receiving ethics committee approval and will be completed within 6 months, which is the study period. |
| Measure | Description | Time Frame |
|---|---|---|
| Hand Mobility in Scleroderma Test | It is a functional test that evaluates hand mobility. It evaluates 4 specific movements for the hand. These are extension, flexion, finger abduction and wrist dorsal extension. Various objects are used for evaluations, including cutting tool handles, pens, coffee packages, coils of rope, milk packages and tables. Each movement is scored between 0 and 3. 0 is used for being able to perform the movement normally and 3 for being completely unable to perform it. The total score is calculated by adding the scores for each movement and the highest score is 12. |
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Inclusion Criteria:
Exclusion Criteria:
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The study will include individuals aged 18 and older who are receiving treatment for Systemic Sclerosis at two university hospital in Turkey, and meet the inclusion and exclusion criteria.
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Inonu University | Malatya | Malatya | Turkey (Türkiye) | |||
| Pamukkale University |
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| ID | Term |
|---|---|
| D012595 | Scleroderma, Systemic |
| ID | Term |
|---|---|
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D012871 | Skin Diseases |
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| Evaluations started immediately after receiving ethics committee approval and will be completed within 6 months, which is the study period. |
| Scleroderma Skin Involvement: Patient-Reported Outcomes | Scleroderma Skin Involvement: Patient-Reported Outcomes was developed to assess skin-related quality of life in patients with systemic sclerosis. SSPRO consists of four domains: physical impact, emotional impact, physical limitation, and social impact, and consists of 18 items in total. Items are rated on a 6-point scale from no disability (0 points) to severe disability (6 points). The scores are added together to calculate a final score (0 to 108 points). A lower score indicates a much better quality of life | Evaluations started immediately after receiving ethics committee approval and will be completed within 6 months, which is the study period. |
| Modified Rodnan Skin Thickness Score | This method used to assess skin thickness in SSc. The Modified Rodnan Skin Thickness Score assesses skin thickness from 17 body regions. A score of 0 indicates normal skin thickness, 1 indicates mild skin thickness, 2 indicates moderate skin thickness, and 3 indicates severe skin thickness; a score of 3 indicates that the skin layers cannot be made between two fingers. The score is calculated by summing the scores from all 17 regions (range 0-51) | Evaluations started immediately after receiving ethics committee approval and will be completed within 6 months, which is the study period. |
| Scleroderma Health Assessment Questionnaire | Used to assess disease activity. It has 20 items in 8 sections assessing physical disability. In addition, Raynaud phenomenon, digital ulcers, pulmonary and gastrointestinal symptoms are assessed according to the Visual Analog Scale, which is scored between "0" and "10". VAS is scored between 0 and 3 by multiplying by 0.2 | Evaluations started immediately after receiving ethics committee approval and will be completed within 6 months, which is the study period. |
| Denizli |
| Turkey (Türkiye) |