New directions for patient-centred care in scleroderma: the Scleroderma Patient-centred Intervention Network (SPIN).
Title | New directions for patient-centred care in scleroderma: the Scleroderma Patient-centred Intervention Network (SPIN). |
Publication Type | Journal Article |
Year of Publication | 2012 |
Authors | Thombs BD, Jewett LR, Assassi S, Baron M, Bartlett SJ, Maia ACosta, El-Baalbaki G, Furst DE, Gottesman K, Haythornthwaite JA, Hudson M, Impens A, Korner A, Leite C, Mayes MD, Malcarne VL, Motivala SJ, Mouthon L, Nielson WR, Plante D, Poiraudeau S, Poole JL, Pope J, Sauve M, Steele RJ, Suarez-Almazor ME, Taillefer S, van den Ende CH, Arthurs E, Bassel M, Delisle V, Milette K, Leavens A, Razykov I, Khanna D |
Journal | Clin Exp Rheumatol |
Volume | 30 |
Issue | 2 Suppl 71 |
Pagination | S23-9 |
Date Published | 2012 Mar-Apr |
ISSN | 0392-856X |
Keywords | Canada, Cooperative Behavior, Europe, Evidence-Based Medicine, Health Services Needs and Demand, Humans, Interdisciplinary Communication, International Cooperation, Organizational Objectives, Patient Advocacy, Patient-Centered Care, Physicians, Program Development, Quality of Life, Research Personnel, Scleroderma, Systemic, United States |
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. |
Alternate Journal | Clin. Exp. Rheumatol. |
PubMed ID | 22244687 |
PubMed Central ID | PMC3925434 |
Grant List | AR052177 / AR / NIAMS NIH HHS / United States K23 AG027860 / AG / NIA NIH HHS / United States K23 AR053858-04 / AR / NIAMS NIH HHS / United States P50 AR054144 / AR / NIAMS NIH HHS / United States P50-AR054144 / AR / NIAMS NIH HHS / United States U01 AR057936A / AR / NIAMS NIH HHS / United States / / Canadian Institutes of Health Research / Canada |