AI Article Synopsis
- Systemic sclerosis (SSc), also known as scleroderma, is a chronic autoimmune disorder that causes skin thickening and can affect vital organs.
- There is currently no cure for SSc, highlighting the need for easily implemented interventions that can enhance health-related quality of life (HRQoL) for patients.
- The Scleroderma Patient-centred Intervention Network (SPIN) was created to fill the gap in evidence-based recommendations by developing, testing, and sharing interventions to support HRQoL in SSc patients.
Article Abstract
Systemic sclerosis (SSc), or scleroderma, is a chronic multisystem autoimmune disorder characterised by thickening and fibrosis of the skin and by the involvement of internal organs such as the lungs, kidneys, gastrointestinal tract, and heart. Because there is no cure, feasibly-implemented and easily accessible evidence-based interventions to improve health-related quality of life (HRQoL) are needed. Due to a lack of evidence, however, specific recommendations have not been made regarding non-pharmacological interventions (e.g. behavioural/psychological, educational, physical/occupational therapy) to improve HRQoL in SSc. The Scleroderma Patient-centred Intervention Network (SPIN) was recently organised to address this gap. SPIN is comprised of patient representatives, clinicians, and researchers from Canada, the USA, and Europe. The goal of SPIN, as described in this article, is to develop, test, and disseminate a set of accessible interventions designed to complement standard care in order to improve HRQoL outcomes in SSc.
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