New directions for patient-centred care in scleroderma: The Scleroderma Patient-centred Intervention Network (SPIN)

Brett D. Thombs, Lisa R. Jewett, Shervin Assassi, Murray Baron, Susan J. Bartlett, Angela Costa Maia, Ghassan El-Baalbaki, Daniel E. Furst, Karen Gottesman, Jennifer A. Haythornthwaite, Marie Hudson, Ann Impens, Annett Korner, Catarina Leite, Maureen D. Mayes, Vanessa L. Malcarne, Sarosh J. Motivala, Luc Mouthon, Warren R. Nielson, Diane PlanteSerge Poiraudeau, Janet L. Poole, Janet Pope, Maureen Sauve, Russell J. Steele, Maria E. Suarez-Almazor, Suzanne Taillefer, Cornelia H. Van den Ende, Erin Arthurs, Marielle Bassel, Vanessa Delisle, Katherine Milette, Allison Leavens, Ilya Razykov, Dinesh Khanna

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Pages (from-to)S23-S29
JournalClinical and experimental rheumatology
Volume30
Issue numberSUPPL.71
StatePublished - May 2012

Keywords

  • Health-related quality of life
  • Patient-centred care
  • Psychosocial
  • Scleroderma

ASJC Scopus subject areas

  • Rheumatology
  • Immunology and Allergy
  • Immunology

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