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New directions for patient-centred care in scleroderma: the Scleroderma Patient-centred Intervention Network (SPIN).
- Source :
-
Clinical and experimental rheumatology [Clin Exp Rheumatol] 2012 Mar-Apr; Vol. 30 (2 Suppl 71), pp. S23-9. Date of Electronic Publication: 2012 May 29. - Publication Year :
- 2012
-
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.
- Subjects :
- Canada
Europe
Evidence-Based Medicine
Humans
Organizational Objectives
Patient Advocacy
Physicians organization & administration
Program Development
Research Personnel organization & administration
Scleroderma, Systemic complications
Scleroderma, Systemic diagnosis
Scleroderma, Systemic psychology
United States
Cooperative Behavior
Health Services Needs and Demand organization & administration
Interdisciplinary Communication
International Cooperation
Patient-Centered Care organization & administration
Quality of Life
Scleroderma, Systemic therapy
Subjects
Details
- Language :
- English
- ISSN :
- 0392-856X
- Volume :
- 30
- Issue :
- 2 Suppl 71
- Database :
- MEDLINE
- Journal :
- Clinical and experimental rheumatology
- Publication Type :
- Academic Journal
- Accession number :
- 22244687