Understanding How Scleroderma Affects Daily Life and Physical Abilities: A Comprehensive Study for Children and Adults

This important observational study at Hacettepe University is investigating how scleroderma affects the physical performance and daily functionality of both children and adults living with this challenging condition. The research, led by Orkun Tüfekçi, PT, PhD(c), aims to provide valuable insights into the biopsychosocial aspects of scleroderma by examining how the disease impacts patients' ability to perform everyday activities and maintain physical function.

The study will enroll approximately 50 participants who come to the university hospital for routine care, including children aged 7-18 and adults over 18 who have been diagnosed with various forms of scleroderma, including localized scleroderma and systemic sclerosis. Researchers will use comprehensive questionnaires and functional assessments to gather data about participants' physical capabilities, quality of life, and overall well-being. The exclusion criteria ensure that participants with advanced organ diseases or those who have recently been in regular exercise programs are not included, helping to maintain the study's focus on understanding scleroderma's specific effects.

Participants will undergo several functional tests designed to measure their physical performance, including the 6-Minute Walk Test to assess endurance, the Timed Up and Go Test to evaluate balance, and the 10-Step Stair Climbing Test to measure lower body strength. These practical tests provide real-world insights into how scleroderma affects mobility and daily activities. Additional assessments like the 10-meter walk test and 30-second sit-to-stand test will further quantify functional limitations that patients may experience.

For children specifically, the study will utilize specialized tools including the Childhood Health Assessment Questionnaire (CHAQ) and Juvenile Arthritis Quality of Life Questionnaire (JAQQ) to understand how scleroderma impacts their development, school participation, and social interactions. The research also considers family dynamics through scales like the Pain Catastrophizing Scale-Parent and Juvenile Arthritis Biopsychosocial Scale-JAB-Q-Family, recognizing that chronic conditions affect entire families, not just individual patients.

Adult participants will complete assessments such as the Scleroderma Health Assessment Questionnaire (SHAQ), which includes specific questions about Raynaud's phenomenon, digital ulcers, and other scleroderma-related symptoms. The Short Form-36 (SF-36) will help researchers understand quality of life impacts, while specialized tools like the Modified Rodnan skin score and Modified Hand Mobility in Scleroderma Test will provide objective measures of disease progression and hand function limitations.

This comprehensive approach is particularly valuable because scleroderma research often focuses primarily on medical treatments rather than daily functionality and quality of life. By examining both physical performance and psychosocial factors, this study addresses the whole person living with scleroderma, not just the disease itself. The findings could lead to better support strategies, improved rehabilitation approaches, and enhanced understanding of how to help patients maintain independence and quality of life despite their diagnosis.

Research in the scleroderma field is crucial because this autoimmune condition affects multiple body systems and can significantly impact daily functioning. Studies like this one help bridge the gap between clinical measurements and real-world experiences, providing healthcare providers with better tools to support patients' overall well-being. Understanding the biopsychosocial aspects of scleroderma is particularly important given the complex nature of the disease, which involves not only physical symptoms but also emotional challenges and social adaptations.

The two-year study duration, running from August 2025 through August 2027, allows for thorough data collection and analysis. The results could contribute to developing more targeted interventions and support programs for both pediatric and adult scleroderma patients. For families affected by scleroderma, research like this offers hope for better management strategies and improved understanding of how to navigate the challenges of living with this chronic condition while maintaining the best possible quality of life.