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
Date: 2012
Persistent ID: http://hdl.handle.net/1822/21020
Origin: RepositóriUM - Universidade do Minho
Subject(s): Scleroderma; Psychosocial; Health-related quality of life; Patient-centred care
Description
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.
