New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN)
Autor(a) principal: | |
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Data de Publicação: | 2012 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://hdl.handle.net/1822/21020 |
Resumo: | 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. |
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New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN)SclerodermaPsychosocialHealth-related quality of lifePatient-centred careScience & TechnologySystemic 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.Pacini EditoreUniversidade do MinhoThombs, Brett D.Jewett, Lisa R.Assassi, ShervinMurray, BaronBartlett, Susan J.Maia, ÂngelaEl-Baalbaki, GhassanFurst, Daniel E.Gottesman, KarenHaythornthwaite, Jennifer A.Hudson, MarieImpens, AnnKorner, AnnettLeite, Catarina da Silva Correia PereiraMayes, Maureen D.Malcarne, Vanessa L.Motivala, Sarosh J.Mouthon, LucNielson, Warren R.Plante, DianePoiraudeau, SergePoole, Janet L.Pope, JanetSauve, MaureenSteele, Russell J.Suarez-Almazor, Maria E.Taillefer, SuzanneEnde, Cornelia H. van denArthurs, ErinBassel, MarielleDelisle, VanessaMilette, KatherineLeavens, AllisonRazykov, IlyaKhanna, Dinesh2012-092012-09-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/1822/21020engThombs, B. D., Jewett, L. R., Assassi, S., Baron, M., Bartlett, S. J., Maia, A. C., . . . Khanna, D. (2012). New directions for patient-centred care in scleroderma: the Scleroderma Patient-centred Intervention Network (SPIN). Clinical and Experimental Rheumatology, 30(2), S23-S29.0392-856X1593-098X22244687info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-21T12:00:01ZPortal AgregadorONG |
dc.title.none.fl_str_mv |
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) |
spellingShingle |
New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN) Thombs, Brett D. Scleroderma Psychosocial Health-related quality of life Patient-centred care Science & Technology |
title_short |
New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN) |
title_full |
New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN) |
title_fullStr |
New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN) |
title_full_unstemmed |
New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN) |
title_sort |
New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN) |
author |
Thombs, Brett D. |
author_facet |
Thombs, Brett D. Jewett, Lisa R. Assassi, Shervin Murray, Baron Bartlett, Susan J. Maia, Ângela El-Baalbaki, Ghassan Furst, Daniel E. Gottesman, Karen Haythornthwaite, Jennifer A. Hudson, Marie Impens, Ann Korner, Annett Leite, Catarina da Silva Correia Pereira Mayes, Maureen D. Malcarne, Vanessa L. Motivala, Sarosh J. Mouthon, Luc Nielson, Warren R. Plante, Diane Poiraudeau, Serge Poole, Janet L. Pope, Janet Sauve, Maureen Steele, Russell J. Suarez-Almazor, Maria E. Taillefer, Suzanne Ende, Cornelia H. van den Arthurs, Erin Bassel, Marielle Delisle, Vanessa Milette, Katherine Leavens, Allison Razykov, Ilya Khanna, Dinesh |
author_role |
author |
author2 |
Jewett, Lisa R. Assassi, Shervin Murray, Baron Bartlett, Susan J. Maia, Ângela El-Baalbaki, Ghassan Furst, Daniel E. Gottesman, Karen Haythornthwaite, Jennifer A. Hudson, Marie Impens, Ann Korner, Annett Leite, Catarina da Silva Correia Pereira Mayes, Maureen D. Malcarne, Vanessa L. Motivala, Sarosh J. Mouthon, Luc Nielson, Warren R. Plante, Diane Poiraudeau, Serge Poole, Janet L. Pope, Janet Sauve, Maureen Steele, Russell J. Suarez-Almazor, Maria E. Taillefer, Suzanne Ende, Cornelia H. van den Arthurs, Erin Bassel, Marielle Delisle, Vanessa Milette, Katherine Leavens, Allison Razykov, Ilya Khanna, Dinesh |
author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author |
dc.contributor.none.fl_str_mv |
Universidade do Minho |
dc.contributor.author.fl_str_mv |
Thombs, Brett D. Jewett, Lisa R. Assassi, Shervin Murray, Baron Bartlett, Susan J. Maia, Ângela El-Baalbaki, Ghassan Furst, Daniel E. Gottesman, Karen Haythornthwaite, Jennifer A. Hudson, Marie Impens, Ann Korner, Annett Leite, Catarina da Silva Correia Pereira Mayes, Maureen D. Malcarne, Vanessa L. Motivala, Sarosh J. Mouthon, Luc Nielson, Warren R. Plante, Diane Poiraudeau, Serge Poole, Janet L. Pope, Janet Sauve, Maureen Steele, Russell J. Suarez-Almazor, Maria E. Taillefer, Suzanne Ende, Cornelia H. van den Arthurs, Erin Bassel, Marielle Delisle, Vanessa Milette, Katherine Leavens, Allison Razykov, Ilya Khanna, Dinesh |
dc.subject.por.fl_str_mv |
Scleroderma Psychosocial Health-related quality of life Patient-centred care Science & Technology |
topic |
Scleroderma Psychosocial Health-related quality of life Patient-centred care Science & Technology |
description |
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. |
publishDate |
2012 |
dc.date.none.fl_str_mv |
2012-09 2012-09-01T00:00:00Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/1822/21020 |
url |
http://hdl.handle.net/1822/21020 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
Thombs, B. D., Jewett, L. R., Assassi, S., Baron, M., Bartlett, S. J., Maia, A. C., . . . Khanna, D. (2012). New directions for patient-centred care in scleroderma: the Scleroderma Patient-centred Intervention Network (SPIN). Clinical and Experimental Rheumatology, 30(2), S23-S29. 0392-856X 1593-098X 22244687 |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
Pacini Editore |
publisher.none.fl_str_mv |
Pacini Editore |
dc.source.none.fl_str_mv |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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1777303660010668032 |