Please use this identifier to cite or link to this item: http://hdl.handle.net/1822/21020

TitleNew directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN)
Author(s)Thombs, Brett D.
Jewett, Lisa R.
Assassi, Shervin
Murray, Baron
Bartlett, Susan J.
Maia, Ângela
El-Baalbaki, Ghassan
Furst, Daniel E.
Gottesman, Karen
Haythornthwaite, Jennifer A.
Hudson, Marie
Impens, Ann
Korner, Annett
Leite, Catarina da Silva Correia Pereira
Mayes, Maureen D.
Malcarne, Vanessa L.
Motivala, Sarosh J.
Mouthon, Luc
Nielson, Warren R.
Plante, Diane
Poiraudeau, Serge
Poole, Janet L.
Pope, Janet
Sauve, Maureen
Steele, Russell J.
Suarez-Almazor, Maria E.
Taillefer, Suzanne
Ende, Cornelia H. van den
Arthurs, Erin
Bassel, Marielle
Delisle, Vanessa
Milette, Katherine
Leavens, Allison
Razykov, Ilya
Khanna, Dinesh
KeywordsScleroderma
Psychosocial
Health-related quality of life
Patient-centred care
Issue dateSep-2012
PublisherPacini Editore
JournalClinical and Experimental Rheumatology
CitationThombs, 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.
TypeArticle
URIhttp://hdl.handle.net/1822/21020
ISSN0392-856X
1593-098X
Peer-Reviewedyes
AccessOpen access
Appears in Collections:CIPsi - Artigos (Papers)

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