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The aim of the present study was to translate and cross-culturally adapt The Hand Scleroderma Experienced Experience (HAnDE) Scale into the Turkish language and investigate its reliability and validity in Turkish-speaking patients with systemic sclerosis.
Objective: The aim of the present study was to translate and cross-culturally adapt The Hand Scleroderma Experienced Experience (HAnDE) Scale into the Turkish language and investigate its reliability and validity in Turkish-speaking patients with systemic sclerosis.
Methods: The HAnDE was cross-culturally adapted according to Beaton's guideline. Participants completed the Turkish version of HAnDE scale (HAnDE-T), The Mouth Handicap in Systemic Sclerosis Scale (MHISS), 36 Item Short Form Survey (SF-36), Health Assessment Questionnaire (HAQ). Internal consistency of the HAnDE-T questionnaire was evaluated by Cronbach's alpha coefficient. Convergent validity was tested using Pearson's correlation coefficient. The construct validity of the HAnDE-T questionnaire was assessed by factor analysis. The construct validity of the HAnDE-T was evaluated by correlating the scores between HAnDE-T and HAQ, SF-36 PCS, SF-36 MCS and MHISS scores.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Study group | got diagnosed scleroderma |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Scales | Other | Participants were asked to complete the HAnDE-T, MHISS, SF-36 and HAQ when they first came. After 1 week, they were asked to complete HAnDE-T for re-test. |
|
| Measure | Description | Time Frame |
|---|---|---|
| HAnDE-T | The Hand Scleroderma Lived Experience Scale. HAnDE is a PROM scale developed by Sibeoni et al. to assess the patient's current situation regarding his/her lived experience of global hand involvement. It consists of 16 questions that patients answer by giving a score between 0 and 4. While 0 means "I do not agree at all", 4 means "I completely agree." The total score of the HAnDE is determined by the sum of all answers given. The total score ranges from 0 to 64. Higher scores indicated higher hand involvement. | Patients were asked to complete the HAnDE-T when they first came (baseline). After 1 week, they were asked to complete HAnDE-T for retest. |
| Measure | Description | Time Frame |
|---|---|---|
| MHISS | The Mouth Handicap in Systemic Sclerosis Scale. MHISS is a scale developed by Mouthon et al. to quantify the handicap associated with mouth disability in patients with SSc. The MHISS consists of 12 questions to assess mouth-related disability. Patients responded to each question by giving a score of at least 0 and maximum 4. MHISS includes three domains: mouth opening, mouth dryness and esthetic concerns. The score that can be obtained from the scale ranges from 0 to 48, with higher scores indicating more limitations. The Turkish version of the MHISS was shown to be valid and reliable. |
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Inclusion Criteria:
Exclusion Criteria:
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diagnosed with scleroderma
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| Name | Affiliation | Role |
|---|---|---|
| Deran Oskay, Prof. Dr. | Gazi University | Study Director |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Amasya University | Amasya | 05000 | Turkey (Türkiye) |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 42264844 | Derived | Pala GG, Tore NG, Sari F, Bayram S, Vasi I, Tufan A, Oskay D. Validity and reliability of the Turkish version of the hand scleroDerma lived experience scale. J Bodyw Mov Ther. 2026 Jul;47:60-64. doi: 10.1016/j.jbmt.2026.03.012. Epub 2026 Mar 11. |
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| ID | Term |
|---|---|
| D045743 | Scleroderma, Diffuse |
| ID | Term |
|---|---|
| D012595 | Scleroderma, Systemic |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D012871 | Skin Diseases |
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| ID | Term |
|---|---|
| D014894 | Weights and Measures |
| ID | Term |
|---|---|
| D008919 | Investigative Techniques |
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| Patients were asked to complete the MHISS when they first came (baseline). |
| SF-36 | 36-Item Short Form Survey. The SF-36 is a general quality of life assessment scale widely used to assess the quality of life. It was developed by the Rand Corporation in 1992. The SF-36 is a scale consisting of 8 sections and 36 items, including physical functionality, role limitations due to physical health problems, pain, social functionality, general health status, role limitations due to emotional problems, energy/vitality and mental health. The scale gives the total score for each subscale separately. The total score ranges from 0 to100. 0 indicates "poor health" status, 100 indicates "good health" status. The Turkish version of the SF-36 was shown to be valid and reliable. | Patients were asked to complete the SF-36 when they first came (baseline). |
| HAQ | Health Assessment Questionnaire. HAQ is an instrument developed to evaluate physical disability in 8 domains of the function: dressing/grooming, arising, eating, walking, hygiene, reach, grip, and activity. HAQ has been validated in patients with scleroderma. HAQ has 20 items in which patients evaluate their daily living activities by scoring between 0 and 3. The score of the test is determined by dividing the total scores given by the number of questions and varies between 0 and 3. The Turkish version of the HAQ was shown to be valid and reliable. | Patients were asked to complete the HAQ when they first came (baseline). |