Behavioural Health Research Group
Our Team
Projects
In The Media
Photos
The Scleroderma Patient-centered Intervention Network (SPIN)

Funding:

Canadian Institutes of Health Research. Emerging Team Grant: Rare Diseases. Emerging Team: The Scleroderma Patient-centered Intervention Network. Principal Investigator: Thombs BD. Co-Investigators: Ahmed S, Arnaert A, Assassi S, Baron M, Bartlett S, Boutron I, Costa Maia A, Dennis C-L, El-Baalbaki G, Ells C, Furst D, Haythornthwaite JA, Hudson M, Impens A, Khanna D, Koerner A, Lehman A, Malcarne V, Marra C, Mayes M, Mendelson C, Mouthon L, Nielson WR, Poiraudeau S, Poole J, Pope J, Semenic S, Steele R, Suarez-Almazor M, Taillefer S, Thombs BD, van den Ende C.  2012 - 2017 ($1,499,765)

Scleroderma Society of Ontario. Coordinator for the Scleroderma Patient-centered Intervention Network. Principal Investigator: Thombs BD. 2011 - 2012 ($25,000)

Scleroderma Society of Canada. Coordinator for the Scleroderma Patient-centered Intervention Network. Principal Investigator: Thombs BD. 2011 - 2012 ($12,500)

Sclérodermie Québec. Consortium for clinical trials of behavioral, psychological, and educational interventions in scleroderma: Initial planning meeting & Coordinator for the Scleroderma Patient-centered Intervention Network. 2010 – 2012 ($8,000). Principal Investigator: Thombs BD.

Lady Davis Institute for Medical Research. Consortium for clinical trials of behavioral, psychological, and educational interventions in scleroderma: Initial planning meeting. 2010 ($7,000). Principal Investigator: Thombs BD.

Lady Davis Institute for Medical Research, Jewish General Hospital. Scleroderma Patient-centered Intervention Network – Partner Funding. Principal Investigator: Thombs BD. 2012 - 2017 ($75,000)

Canadian Institutes of Health Research. Meetings, Planning, and Dissemination Grant. Consortium for clinical trials of behavioral, psychological, and educational interventions in scleroderma: Initial planning meeting. 2010 ($18,880). Principal Investigator: Thombs BD.

Canadian Institutes of Health Research. Meetings, Planning, and Dissemination Grant. Joint Patient – Researcher Meeting to Interpret and Plan for Dissemination of Patient Survey Results. 2009 ($11,240). Principal Investigator: Thombs BD. Co-Investigator: Buzza B.

Canadian Institutes of Health Research. Meetings, Planning, and Dissemination Grant. Improving health and well-being in scleroderma: Developing a collaborative behavioral health research agenda. 2008 ($18,454). Principal Investigator: Thombs BD.

Project Description:

Systemic sclerosis, or scleroderma, is a chronic multi-system autoimmune disorder, clinically characterized by thickening and fibrosis of the skin and by the involvement of internal organs such as the lungs, gastrointestinal tract, and heart. Because there is no cure, accessible, feasibly-implemented interventions are needed to improve quality of life for people with scleroderma. Due to a lack of evidence, scleroderma management guidelines do not include recommendations regarding adjunctive behavioural/psychological, educational, or physical/occupational therapy interventions, which have been successfully used in other chronic diseases. The Scleroderma Patient-centered Intervention Network (SPIN) was organized to address this gap. SPIN is comprised of (1) patient representatives from key organizations in Canada, the USA, and Europe; (2) clinicians and researchers with extensive experience in scleroderma, including psychosocial issues and clinical epidemiology; and (3) researchers with expertise in health services research, health economics, health technology assessment, health policy, and using technology to deliver patient-centred health care services. The goal of SPIN is to develop, test, and disseminate a set of accessible adjunctive care interventions to improve quality of life in scleroderma patients. SPIN recently received an Emerging Team Grant for Rare Diseases from the Canadian Institutes of Health Research (CIHR) which will provide funding for SPIN to create its large, international cohort of scleroderma patients, as well as to conduct pilot and feasibility trials of psychosocial and rehabilitation interventions over the next 5 years. The interventions that SPIN is develops will focus on problems identified by scleroderma patients as important to quality of life and well-being, such as hand function and mobility, sleep problems, emotions and stress, concerns about appearance, pain, coping with scleroderma, nutrition, and exercise.

Publications (Trainees in bold and underlined):

Thombs BD, Jewett LR, Assassi S, Baron M, Costa Maia A, El-Baalbaki G, Furst D, Gottesman K, Haythornthwaite J, Hudson M, Impens A, Korner A, Leite C, Mayes M, Malcarne V, Motivala S, Mouthon L, Nielson W, Plante D, Poiraudeau S, Poole J, Pope J, Sauve M, Steele R, Suarez-Almazor M, Taillefer S, van den Ende C, Arthurs E, Bassel M, Delisle V, Milette K, Leavens A, Razykov I, Khanna D. New Directions for Patient-Centered Care in Scleroderma: The Scleroderma Patient-Centered Intervention Network. Clinical and Experimental Rheumatology. In Press.

Thombs BD, van Lankveld W, Bassel M, Baron M, Buzza R, Haslam S, Haythornthwaite JA, Hudson M, Jewett LR, Knafo R, Kwakkenbos L, Malcarne V, Milette K, Motivala S, Newton EG, Nielson W, Pacy M, Razykov I, Schieir O, Worron-Sauve M, Taillefer S. Psychological health and well-being in systemic sclerosis: State of the science and consensus research agenda. Arthritis Care & Research. 2010;62(8):1181-1189. [Impact Factor = 4.2]. (click here for abstract)