Hand ScleroDerma Lived Experience Scale in Individuals with Systemic Sclerosis

Launched by PAMUKKALE UNIVERSITY · Oct 24, 2024

Keywords

ClinConnect Summary

This is an observational study in Turkey to check whether the Turkish version of the Hand scleroDerma Lived Experience Scale (HAnDE Scale) works well for people with systemic sclerosis (also called scleroderma). It does not test a treatment. Researchers will use this questionnaire and a few simple hand and skin-related assessments to see if the tool reliably measures how hand problems affect daily life and function in people with this condition. The study is a validation project, meaning it looks at how well the questions capture the patient experience.

Eligible participants are adults 18 and older who have been diagnosed with systemic sclerosis by a rheumatologist and can understand Turkish. They should not have major other neurological, orthopedic, or psychiatric issues that would interfere with hand function or cooperation. About 54 people are planned to take part at two universities (Pamukkale University in Denizli and Inonu University in Malatya). The study started in late 2024 and aims to finish around July 2025, with enrollment by invitation. Participants will complete the HAnDE Scale and other ways of assessing hand movement, skin involvement, and overall quality of life during a six-month study period.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Being diagnosed with Systemic Sclerosis by a rheumatologist
• • Being 18 years of age or older,
• Exclusion Criteria:
• • Presence of neurological disease
• • Presence of any orthopedic problem that will affect functionality
• • Presence of orthopedic surgery history
• • Inability to speak or understand Turkish fluently.
• • Presence of psychiatric disease that will affect cooperation.
• • Severe neurological disease that will affect hand functions (peripheral nerve lesion, trauma, operation, cerebrovascular accident).
• • Heart failure and lung pathology that will affect daily living activities.