title: New directions for patient-centred care in scleroderma: the Scleroderma Patient-centred Intervention Network (SPIN).
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.
authors.affiliation: Jewish General Hospital, Montreal, Quebec, Canada. brett.thombs@mcgill.ca
authors.forename: Brett D
authors.initials: BD
authors.lastname: Thombs
authors.forename: Lisa R
authors.initials: LR
authors.lastname: Jewett
authors.forename: Shervin
authors.initials: S
authors.lastname: Assassi
authors.forename: Murray
authors.initials: M
authors.lastname: Baron
authors.forename: Susan J
authors.initials: SJ
authors.lastname: Bartlett
authors.forename: Angela Costa
authors.initials: AC
authors.lastname: Maia
authors.forename: Ghassan
authors.initials: G
authors.lastname: El-Baalbaki
authors.forename: Daniel E
authors.initials: DE
authors.lastname: Furst
authors.forename: Karen
authors.initials: K
authors.lastname: Gottesman
authors.forename: Jennifer A
authors.initials: JA
authors.lastname: Haythornthwaite
authors.forename: Marie
authors.initials: M
authors.lastname: Hudson
authors.forename: Ann
authors.initials: A
authors.lastname: Impens
authors.forename: Annett
authors.initials: A
authors.lastname: Korner
authors.forename: Catarina
authors.initials: C
authors.lastname: Leite
authors.forename: Maureen D
authors.initials: MD
authors.lastname: Mayes
authors.forename: Vanessa L
authors.initials: VL
authors.lastname: Malcarne
authors.forename: Sarosh J
authors.initials: SJ
authors.lastname: Motivala
authors.forename: Luc
authors.initials: L
authors.lastname: Mouthon
authors.forename: Warren R
authors.initials: WR
authors.lastname: Nielson
authors.forename: Diane
authors.initials: D
authors.lastname: Plante
authors.forename: Serge
authors.initials: S
authors.lastname: Poiraudeau
authors.forename: Janet L
authors.initials: JL
authors.lastname: Poole
authors.forename: Janet
authors.initials: J
authors.lastname: Pope
authors.forename: Maureen
authors.initials: M
authors.lastname: Sauve
authors.forename: Russell J
authors.initials: RJ
authors.lastname: Steele
authors.forename: Maria E
authors.initials: ME
authors.lastname: Suarez-Almazor
authors.forename: Suzanne
authors.initials: S
authors.lastname: Taillefer
authors.forename: Cornelia H
authors.initials: CH
authors.lastname: van den Ende
authors.forename: Erin
authors.initials: E
authors.lastname: Arthurs
authors.forename: Marielle
authors.initials: M
authors.lastname: Bassel
authors.forename: Vanessa
authors.initials: V
authors.lastname: Delisle
authors.forename: Katherine
authors.initials: K
authors.lastname: Milette
authors.forename: Allison
authors.initials: A
authors.lastname: Leavens
authors.forename: Ilya
authors.initials: I
authors.lastname: Razykov
authors.forename: Dinesh
authors.initials: D
authors.lastname: Khanna
mesh_terms: D002170:Canada; D003299:Cooperative Behavior; D005060:Europe; D019317:Evidence-Based Medicine; D006301:Health Services Needs and Demand / Q000458:organization & administration*; D006801:Humans; D033183:Interdisciplinary Communication; D007391:International Cooperation; D009937:Organizational Objectives; D010344:Patient Advocacy; D018802:Patient-Centered Care / Q000458:organization & administration*; D010820:Physicians / Q000458:organization & administration; D016730:Program Development; D011788:Quality of Life; D012108:Research Personnel / Q000458:organization & administration; D012595:Scleroderma, Systemic / Q000150:complications / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D014481:United States