TY - JOUR
T1 - New directions for patient-centred care in scleroderma
T2 - The Scleroderma Patient-centred Intervention Network (SPIN)
AU - Thombs, Brett D.
AU - Jewett, Lisa R.
AU - Assassi, Shervin
AU - Baron, Murray
AU - Bartlett, Susan J.
AU - Maia, Angela Costa
AU - El-Baalbaki, Ghassan
AU - Furst, Daniel E.
AU - Gottesman, Karen
AU - Haythornthwaite, Jennifer A.
AU - Hudson, Marie
AU - Impens, Ann
AU - Korner, Annett
AU - Leite, Catarina
AU - Mayes, Maureen D.
AU - Malcarne, Vanessa L.
AU - Motivala, Sarosh J.
AU - Mouthon, Luc
AU - Nielson, Warren R.
AU - Plante, Diane
AU - Poiraudeau, Serge
AU - Poole, Janet L.
AU - Pope, Janet
AU - Sauve, Maureen
AU - Steele, Russell J.
AU - Suarez-Almazor, Maria E.
AU - Taillefer, Suzanne
AU - Van den Ende, Cornelia H.
AU - Arthurs, Erin
AU - Bassel, Marielle
AU - Delisle, Vanessa
AU - Milette, Katherine
AU - Leavens, Allison
AU - Razykov, Ilya
AU - Khanna, Dinesh
PY - 2012/5
Y1 - 2012/5
N2 - 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.
AB - 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.
KW - Health-related quality of life
KW - Patient-centred care
KW - Psychosocial
KW - Scleroderma
UR - http://www.scopus.com/inward/record.url?scp=84867381693&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84867381693&partnerID=8YFLogxK
M3 - Article
C2 - 22244687
AN - SCOPUS:84867381693
SN - 0392-856X
VL - 30
SP - S23-S29
JO - Clinical and experimental rheumatology
JF - Clinical and experimental rheumatology
IS - SUPPL.71
ER -