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

Author

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

17. Cross-language measurement equivalence of the Center for Epidemiologic Studies Depression (CES-D) scale in systemic sclerosis: A comparison of Canadian and Dutch patients

Author

Kwakkenbos, L., Arthurs, E., Hoogen, F.H.J. van den, Hudson, M., Lankveld, W.G. van, Baron, M., Ende, C.H.M. van den, Thombs, B.D., Kwakkenbos, L., Arthurs, E., Hoogen, F.H.J. van den, Hudson, M., Lankveld, W.G. van, Baron, M., Ende, C.H.M. van den, and Thombs, B.D.

Abstract

Contains fulltext : 118230.pdf (publisher's version ) (Open Access), OBJECTIVES: Increasingly, medical research involves patients who complete outcomes in different languages. This occurs in countries with more than one common language, such as Canada (French/English) or the United States (Spanish/English), as well as in international multi-centre collaborations, which are utilized frequently in rare diseases such as systemic sclerosis (SSc). In order to pool or compare outcomes, instruments should be measurement equivalent (invariant) across cultural or linguistic groups. This study provides an example of how to assess cross-language measurement equivalence by comparing the Center for Epidemiologic Studies Depression (CES-D) scale between English-speaking Canadian and Dutch SSc patients. METHODS: The CES-D was completed by 922 English-speaking Canadian and 213 Dutch SSc patients. Confirmatory factor analysis (CFA) was used to assess the factor structure in both samples. The Multiple-Indicator Multiple-Cause (MIMIC) model was utilized to assess the amount of differential item functioning (DIF). RESULTS: A two-factor model (positive and negative affect) showed excellent fit in both samples. Statistically significant, but small-magnitude, DIF was found for 3 of 20 items on the CES-D. The English-speaking Canadian sample endorsed more feeling-related symptoms, whereas the Dutch sample endorsed more somatic/retarded activity symptoms. The overall estimate in depression scores between English and Dutch was not influenced substantively by DIF. CONCLUSIONS: CES-D scores from English-speaking Canadian and Dutch SSc patients can be compared and pooled without concern that measurement differences may substantively influence results. The importance of assessing cross-language measurement equivalence in rheumatology studies prior to pooling outcomes obtained in different languages should be emphasized.

Published
2013

18. Processing and Transmission of Information

Author

Arthurs, E., Huffman, D. A., Schreiber, William F., Wozencraft, J. M., Cunningham, J. E., Gronemann, Uri F., Huang, T. S., Pan, J. W., Tretiak, O. J., Goblick, T. J., Jr., Kennedy, Robert S., Massey, J. L., Arthurs, E., Huffman, D. A., Schreiber, William F., Wozencraft, J. M., Cunningham, J. E., Gronemann, Uri F., Huang, T. S., Pan, J. W., Tretiak, O. J., Goblick, T. J., Jr., Kennedy, Robert S., and Massey, J. L.

Abstract

Contains research objectives and reports on four research projects., Lincoln Laboratory, Purchase Order DDL B-00306, U. S. Army, U. S. Navy, U. S. Air Force under Air Force Contract AF19(604)-7400, National Science Foundation (Grant B-16526), National Institutes of Health (Grant MP-4737)

Published
2010

39. Picturelab.

Author

Arthurs, E., Bartlett, W. S., Ladd, D. J., Salmon, R. L., and Whipple, J. H.

Published
1970
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