Patient Perspective, Scleroderma (Limited and Diffuse), Systemic Sclerosis (Scleroderma), Systemic Sclerosis (SSc)
Conditions
Brief summary
The Patient Self-Assessment of Skin Thickness in Upper Limb (PASTUL) questionnaire was developed to enable patients to assess skin thickness in systemic sclerosis (SSc) physically and has been validated for reliability and validity, as it correlates with the modified Rodnan Skin Score (mRSS), which rheumatologists assess. Thus, it has been demonstrated to be an applicable and easy approach for assessing skin thickness in SSc patients through patient-reported measurements. This study aimed to develop a Turkish version of the PASTUL questionnaire and to provide for its use in the Turkish population.
Interventions
OTHERQuestionnaire study
Questionnaire application
Sponsors
Hacettepe University
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Individuals diagnosed with scleroderma, * Individuals aged 18 years and older
Exclusion criteria
* Advanced heart/lung/liver/kidney disease, neurological disease, and malignancies * Individuals who are unwilling to participate
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Patient Self-Assessment of Skin Thickness in Upper Limb (PASTUL) Questionnaire | Two weeks | The PASTUL survey is a simple assessment by the patient of the skin in eight areas of the upper extremities as normal, mildly, moderately, or severely thickened, corresponding to the mRSS assessment. The assessment score is consistent with the mRSS (0-3). A high score indicates increased skin thickness |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Cognitive Exercise Therapy Approach-Biopsychosocial Questionnaire (BETY-BQ) | Two weeks | It was standardized as a biopsychosocial assessment tool and is scored using a 5-point Likert scale, with each item rated from 0 to 4 points. A high total score on the 30-item scale indicates a high level of biopsychosocial impact. |
| Short Form-36 (SF-36) | Two weeks | It will be used to determine an individual's quality of life levels. Each sub-parameter is scored between 0 and 100 points, with a high score indicating good health status. The SF-36 scale has eight sub-parameters: general health perception, physical function, social function, pain, mental health, role difficulty due to physical reasons, role difficulty due to emotional reasons, and vitality. It contains 11 questions consisting of a total of 36 items. |
| Modified Rodnan skin score (MRSS) | Two weeks | A pediatric and adult rheumatologist assessed it. The MRSS evaluates skin thickening in 17 body regions, graded from 0 (normal) to 3 (severe skin thickening). The total score ranges from 0 to 51, with increased scores indicating poor skin involvement. |
| Scleroderma Health Assessment Questionnaire (SHAQ) | Two weeks | It was developed by adding five questions to the HAQ regarding Raynaud's phenomenon, digital ulcers, gastrointestinal, pulmonary, and general scleroderma symptoms, to be rated on a 15 cm line. The SHAQ total score ranges from 0 to 3. A high score indicates low functionality. |
| Scleroderma Skin Patient-Reported Outcomes (SSPRO) Questionnaire | Two weeks | It assesses the impact of skin involvement on quality of life. The 18-item measure consists of 4 categories: physical effect (PE), emotional effect (EE), social effect (SE), and physical limitation (PL). Each item is scored on a scale ranging from no impairment (0 points) to severe impairment (6 points), with a total score of 108. A lower score indicates a much better quality of life. |
| Cochin Hand Function Scale | Two weeks | It consists of 18 questions related to daily activities. Each question is scored on a questionnaire of 0 (no difficulty) to 5 (impossible), and the total score ranges from 0 to 90. A total CHFS score of 26 or higher is considered to indicate hand function limitation. |
| Modified Hand Mobility in Scleroderma Test (mHAMIS) | Two weeks | It is a functional test developed specifically for scleroderma to assess an individual's hand function. It evaluates four specific hand movements (finger flexion, finger extension, finger abduction, and dorsal extension). Scores range from 0 (normal) to 3 (complete failure) for each movement, with a total score ranging from 0 to 12. |
Countries
Turkey (Türkiye)
Contacts
Primary ContactOrkun Tüfekçi, PT, PhD(c)
Outcome results
None listed