People with rare diseases such as systemic sclerosis (SSc) do not typically have access to evidence-based, disease-specific rehabilitation interventions, and many factors complicate the delivery of these types of interventions. Few centers treat enough patients with a given rare disease to sustain a disease-specific intervention program. Additionally, many patients with rare diseases live far from major treatment centers. These individuals often receive care in local settings from health care providers with little or no experience treating their disease and without knowledge about the specific needs of people with the disease. Hand problems, including joint contractures and limits in range of motion are common in SSc, and frequently lead to functional limitations in daily activities. Interventions from physical and occupational therapists may help to reduce disability, but finding a way to feasibly deliver these types of interventions in a cost-effective manner is an important challenge. The objective of this presentation is to illustrate the development of a feasibly-delivered, disease-specific online intervention to improve hand function, based on relevant literature, clinical expertise, and existing programs. The intervention is developed by investigators of the Scleroderma Patient-centered Intervention Network (SPIN), an international collaboration of patient organizations, clinicians, and researchers, who are establishing a clinical research infrastructure to test accessible, low-cost, self-guided online interventions to reduce disability and improve the health-related quality of life for people living with SSc.
Disclosure of Interest None declared