1. New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN)
- Author
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Bd, Thombs, Lr, Jewett, Assassi S, Baron M, Susan Bartlett, Ac, Maia, El-Baalbaki G, Furst DE, Gottesman K, Ja, Haythornthwaite, Hudson M, Impens A, Korner A, Leite C, Md, Mayes, Vl, Malcarne, Sj, Motivala, Mouthon L, Wr, Nielson, Plante D, Poiraudeau S, Jl, Poole, Pope J, Sauve M, Rj, Steele, Me, Suarez-Almazor, Taillefer S, Ch, Den Ende, Arthurs E, Bassel M, Delisle V, Milette K, Leavens A, Razykov I, Khanna D, and Universidade do Minho
- Subjects
Canada ,International Cooperation ,Health-related quality of life ,Patient-centred care ,Patient Advocacy ,Article ,Scleroderma ,Patient-Centered Care ,Physicians ,Humans ,Organizational Objectives ,Cooperative Behavior ,Program Development ,skin and connective tissue diseases ,Health Services Needs and Demand ,Evidence-Based Medicine ,Scleroderma, Systemic ,Science & Technology ,integumentary system ,Research Personnel ,United States ,Europe ,Quality of Life ,Interdisciplinary Communication ,Psychosocial - 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., The initial organisational meeting for SPIN was funded by a Canadian Institutes of Health Research (CIHR) Meetings, Planning, and Dissemination grant to B.D. Thombs (KPE-109130), Sclerodermie Quebec, and the Lady Davis Institute for Medical Research of the Jewish General Hospital, Montreal, Quebec. SPIN receives finding support from the Sclemderma Society of Ontario, the Scleroderma Society of Canada, and Sclerodermie Quebec. B.D. Thombs and M. Hudson are supported by New Investigator awards from the CIHR, and Etablissement de Jeunes Chercheurs awards from the Fonds de la Recherche en Sante Quebec (FRSQ). M. Baron is the director of the Canadian Scleroderma Research Group, which receives grant folding from the CIHR, the Scleroderma Society of Canada and its provincial chapters, Scleroderma Society of Ontario, Sclerodermie Quebec, and the Ontario Arthritis Society, and educational grants from Actelion Pharmaceuticals and Pfizer. M.D. Mayes and S. Assassi are supported by the NIH/NIAMS Scleroderma Center of Research Translation grant no. P50-AR054144. S.J. Motivala is supported by an NIH career development grant (K23 AG027860) and the UCLA Cousins Center for Psychoneuroimmunology. D. Khanna is supported by a NIH/NIAMS K23 AR053858-04) and NIH/NIAMS U01 AR057936A, the National Institutes of Health through the NIH Roadmap for Medical Research Grant (AR052177), and has served as a consultant or on speakers bureau for Actelion, BMS, Gilead, Pfizer, and United Therapeutics.
- Published
- 2012