Please use this identifier to cite or link to this item:
|Title:||New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN)|
|Author(s):||Thombs, Brett D.|
Jewett, Lisa R.
Bartlett, Susan J.
Furst, Daniel E.
Haythornthwaite, Jennifer A.
Leite, Catarina da Silva Correia Pereira
Mayes, Maureen D.
Malcarne, Vanessa L.
Motivala, Sarosh J.
Nielson, Warren R.
Poole, Janet L.
Steele, Russell J.
Suarez-Almazor, Maria E.
Ende, Cornelia H. van den
Health-related quality of life
|Journal:||Clinical and Experimental Rheumatology|
|Citation:||Thombs, B. D., Jewett, L. R., Assassi, S., Baron, M., Bartlett, S. J., Maia, A. C., . . . Khanna, D. (2012). New directions for patient-centred care in scleroderma: the Scleroderma Patient-centred Intervention Network (SPIN). Clinical and Experimental Rheumatology, 30(2), S23-S29.|
|Abstract(s):||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.|
|Appears in Collections:||CIPsi - Artigos (Papers)|