Examination of the association of sex and race/ethnicity with appearance concerns: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study

Lisa R Jewett¹, Linda Kwakkenbos², Marie-Eve Carrier³, Vanessa L Malcarne⁴, Susan J Bartlett⁵, Daniel E Furst⁶, Karen Gottesman⁷, Maureen D Mayes⁸, Shervin Assassi⁸, Diana Harcourt⁹, Heidi Williamson⁹, Sindhu R Johnson¹⁰, Annett Körner¹, Virginia Steen¹¹, Rina S Fox¹², Shadi Gholizadeh¹², Sarah D Mills¹², Jacqueline C Molnar¹³, Danielle B Rice¹⁴, Brett D Thombs¹⁵; the SPIN Investigators

Collaborators, Affiliations

Collaborators

the SPIN Investigators:
Murray Baron¹⁶, Frank van den Hoohen¹⁷, Dinesh Khanna¹⁸, Luc Mouthon¹⁹, Warren R. Nielson²⁰, Serge Poiraudeau¹⁹, Robert Riggs²¹, Maureen Sauve²², Fredrick Wigley²³, Isabelle Boutron²⁴, Angela Costa Maia²⁵, Ghassan El-Baalbaki²⁶, Carolyn Ells¹⁶, Cornelia van den Ende²⁷, Kim Fligelstone²⁸, Catherine Fortune²², Tracy Frech²⁹, Dominique Godard³⁰, Daphna Harel³¹, Marie Hudson¹⁶, Ann Impens³², Ann Tyrell Kennedy³³, Maggie Larche³⁴, Catarina Leite²⁵, Carlo Marra³⁵, Karen Nielsen²², Janet L. Poole³⁶, Janet Pope³⁷, Alexandra Portales³⁸, Tatiana Sofia Rodriguez Reina³⁹, Anne A. Schouffoer⁴⁰, Russell J. Steele⁴¹, Maria E. Suarez-Almazor⁴², Joep Welling⁴³, Durhane Wong-Rieger⁴⁴, Alexandra Albert⁴⁵, Guylaine Arsenault⁴⁶, Lyne Bissonnette⁴⁶, Gilles Boire⁴⁶, Alessandra Bruns⁴⁶, Patricia Carreira⁴⁷, Lorinda Chung⁴⁸, Pierre Dagenais⁴⁶, Christopher P. Denton⁴⁹, Robyn Domsic⁵⁰, James V. Dunne⁵¹, Paul Fortin⁴⁵, Anna Gill⁴⁹, Jessica Gordon⁵², Genevieve Gyger⁴¹, Ariane L. Herrick⁵³, Joanne Manning⁵⁴, Monique Hinchcliff⁵⁵, Alena Ikic⁴⁵, Niall Jones⁵⁶, Artur Jose de B. Fernandes⁴⁶, Suzanne Kafaja⁵⁷, Nader Khalidi³⁴, Benjamin Korman⁵⁵, Patrick Liang⁴⁶, Ariel Masetto⁴⁶, David Robinson⁵⁸, Sophie Roux⁴⁶, Elena Schiopu¹⁸, Doug Smith⁵⁹, Robert Spiera⁵², Evelyn Sutton⁶⁰, Carter Thorne⁶¹, John Varga⁵⁵, Pearce Wilcox⁵¹, Vanessa C. Delisle⁴¹, Claire Fedoruk⁴¹, Brooke Levis⁴¹, Katherine Milette⁴¹, Mia R. Pepin⁴¹, Jennifer Persmann²⁶

Affiliations

¹ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal; and Department of Educational and Counselling Psychology, McGill University, Montreal, Quebec, Canada.
² Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal; Department of Psychiatry, McGill University, Montreal, Quebec, Canada; and Behavioural Science Institute, Clinical Psychology, Radboud University, Nijmegen, the Netherlands.
³ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Quebec, Canada.
⁴ Department of Psychology, San Diego State University, San Diego, CA, USA; and San Diego State University/University of California, San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA.
⁵ McGill University, Health Center, Montreal; and Department of Medicine, McGill University, Montreal, Quebec, Canada.
⁶ Division of Rheumatology, Geffen School of Medicine at the University of California, Los Angeles, USA.
⁷ Scleroderma Foundation, USA.
⁸ Department of Internal Medicine, Division of Rheumatology, University of Texas McGovern Medical School, Houston, TX, USA.
⁹ Centre for Appearance Research, University of the West of England, Bristol, UK.
¹⁰ Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, Toronto, Ontario, Canada.
¹¹ Department of Medicine, Georgetown University, Washington, DC, USA.
¹² San Diego State University/University of California, San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA.
¹³ Department of Psychology, McGill University, Montreal, Quebec, Canada.
¹⁴ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal; and Department of Psychology, McGill University, Montreal, Quebec, Canada.
¹⁵ Lady Davis Inst.Med.Res, Jewish Gen.Hosp; Depts. Educational & Counselling Psychology, Psychiatry, McGill Univ; Dept.of Medicine, McGill Univ; Depts. Psychology, Epidemiology, Biostats & Occupational Health, School Nursing, McGill Univ, Montreal, Canada.
¹⁶ McGill University, Montreal, Quebec, Canada.
¹⁷ Radboud University Medical Center and Sint Maartenskliniek, Nijmegen, The Netherlands.
¹⁸ University of Michigan, Ann Arbor, MI, USA.
¹⁹ Université Paris Descartes, Paris, France.
²⁰ St. Joseph's Health Care, London, Ontario, Canada.
²¹ Scleroderma Foundation, Danvers, MA, USA.
²² Scleroderma Society of Ontario, Hamilton, Canada.
²³ Johns Hopkins University School of Medicine, Baltimore, MD, USA.
²⁴ Université Paris Descartes and Assistance Publique-Hôpitaux de Paris, France.
²⁵ University of Minho, Braga, Portugal.
²⁶ Université du Quebec à Montréal, Canada.
²⁷ Sint Maartenskliniek, Nijmegen, The Netherlands.
²⁸ Scleroderma Society, London, UK.
²⁹ University of Utah, Salt Lake City, Utah, USA.
³⁰ Association des Sclérodermiques de France, Sorel-Moussel, France.
³¹ New York University, New York, USA.
³² Midwestern University, Downers Grove, IL, USA.
³³ Federation of European Scleroderma Associations, Dublin, Ireland.
³⁴ McMaster University, Hamilton, Ontario, Canada.
³⁵ Memorial University, St. John's, Newfoundland, Canada.
³⁶ University of New Mexico, Albuquerque, NM, USA.
³⁷ University of Western Ontario, London, Canada.
³⁸ Asociación Española de Esclerodermia, Madrid, Spain.
³⁹ Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico.
⁴⁰ Leiden University Medical Center and Haga Teaching Hospital, the Hague, Leiden, The Netherlands.
⁴¹ Jewish General Hospital and McGill University, Montréal, Quebec, Canada.
⁴² University of Texas MD Anderson Cancer Center, Houston, TX, USA.
⁴³ NVLE Dutch Patient Organisation for Systemic Autoimmune Diseases, Utrecht, The Netherlands.
⁴⁴ Canadian Organisation for Rare Disorders, Toronto, Ontarion, Canada.
⁴⁵ Université Laval, Quebec, Canada.
⁴⁶ Sherbrooke University, Quebec, Canada.
⁴⁷ Servicio de Reumatologia del Hospital 12 de Octubre, Madrid, Spain.
⁴⁸ Stanford University, Stanford, CA, USA.
⁴⁹ Royal Free London Hospital, London, UK.
⁵⁰ University of Pittsburgh, PA, USA.
⁵¹ St. Paul's Hospital and University of British Columbia, Vancouver, BC, Canada.
⁵² Hospital for Special Surgery, New York, USA.
⁵³ University of Manchester, Salford Royal NHS Foundation Trust, Manchester, UK.
⁵⁴ Salford Royal NHS Foundation Trust, Salford, UK.
⁵⁵ Northwestern University, Chicago, IL, USA.
⁵⁶ University of Alberta, Edmonton, Canada.
⁵⁷ University of California, Los Angeles, CA, USA.
⁵⁸ University of Manitoba, Winnipeg, Canada.
⁵⁹ University of Ottawa, Ontario, Canada.
⁶⁰ Dalhousie University, Halifax, Nova Scotia, Canada.
⁶¹ Southlake Regional Health Centre, Newmarket, Ontario, Canada.

PMID: 27494308

Comparative Study

Examination of the association of sex and race/ethnicity with appearance concerns: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study

Lisa R Jewett et al. Clin Exp Rheumatol. 2016 Sep-Oct.

. 2016 Sep-Oct;34 Suppl 100(5):92-99.

Epub 2016 Aug 1.

Authors

Collaborators

the SPIN Investigators:
Murray Baron¹⁶, Frank van den Hoohen¹⁷, Dinesh Khanna¹⁸, Luc Mouthon¹⁹, Warren R. Nielson²⁰, Serge Poiraudeau¹⁹, Robert Riggs²¹, Maureen Sauve²², Fredrick Wigley²³, Isabelle Boutron²⁴, Angela Costa Maia²⁵, Ghassan El-Baalbaki²⁶, Carolyn Ells¹⁶, Cornelia van den Ende²⁷, Kim Fligelstone²⁸, Catherine Fortune²², Tracy Frech²⁹, Dominique Godard³⁰, Daphna Harel³¹, Marie Hudson¹⁶, Ann Impens³², Ann Tyrell Kennedy³³, Maggie Larche³⁴, Catarina Leite²⁵, Carlo Marra³⁵, Karen Nielsen²², Janet L. Poole³⁶, Janet Pope³⁷, Alexandra Portales³⁸, Tatiana Sofia Rodriguez Reina³⁹, Anne A. Schouffoer⁴⁰, Russell J. Steele⁴¹, Maria E. Suarez-Almazor⁴², Joep Welling⁴³, Durhane Wong-Rieger⁴⁴, Alexandra Albert⁴⁵, Guylaine Arsenault⁴⁶, Lyne Bissonnette⁴⁶, Gilles Boire⁴⁶, Alessandra Bruns⁴⁶, Patricia Carreira⁴⁷, Lorinda Chung⁴⁸, Pierre Dagenais⁴⁶, Christopher P. Denton⁴⁹, Robyn Domsic⁵⁰, James V. Dunne⁵¹, Paul Fortin⁴⁵, Anna Gill⁴⁹, Jessica Gordon⁵², Genevieve Gyger⁴¹, Ariane L. Herrick⁵³, Joanne Manning⁵⁴, Monique Hinchcliff⁵⁵, Alena Ikic⁴⁵, Niall Jones⁵⁶, Artur Jose de B. Fernandes⁴⁶, Suzanne Kafaja⁵⁷, Nader Khalidi³⁴, Benjamin Korman⁵⁵, Patrick Liang⁴⁶, Ariel Masetto⁴⁶, David Robinson⁵⁸, Sophie Roux⁴⁶, Elena Schiopu¹⁸, Doug Smith⁵⁹, Robert Spiera⁵², Evelyn Sutton⁶⁰, Carter Thorne⁶¹, John Varga⁵⁵, Pearce Wilcox⁵¹, Vanessa C. Delisle⁴¹, Claire Fedoruk⁴¹, Brooke Levis⁴¹, Katherine Milette⁴¹, Mia R. Pepin⁴¹, Jennifer Persmann²⁶

Affiliations

¹ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal; and Department of Educational and Counselling Psychology, McGill University, Montreal, Quebec, Canada.
² Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal; Department of Psychiatry, McGill University, Montreal, Quebec, Canada; and Behavioural Science Institute, Clinical Psychology, Radboud University, Nijmegen, the Netherlands.
³ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Quebec, Canada.
⁴ Department of Psychology, San Diego State University, San Diego, CA, USA; and San Diego State University/University of California, San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA.
⁵ McGill University, Health Center, Montreal; and Department of Medicine, McGill University, Montreal, Quebec, Canada.
⁶ Division of Rheumatology, Geffen School of Medicine at the University of California, Los Angeles, USA.
⁷ Scleroderma Foundation, USA.
⁸ Department of Internal Medicine, Division of Rheumatology, University of Texas McGovern Medical School, Houston, TX, USA.
⁹ Centre for Appearance Research, University of the West of England, Bristol, UK.
¹⁰ Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, Toronto, Ontario, Canada.
¹¹ Department of Medicine, Georgetown University, Washington, DC, USA.
¹² San Diego State University/University of California, San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA.
¹³ Department of Psychology, McGill University, Montreal, Quebec, Canada.
¹⁴ Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal; and Department of Psychology, McGill University, Montreal, Quebec, Canada.
¹⁵ Lady Davis Inst.Med.Res, Jewish Gen.Hosp; Depts. Educational & Counselling Psychology, Psychiatry, McGill Univ; Dept.of Medicine, McGill Univ; Depts. Psychology, Epidemiology, Biostats & Occupational Health, School Nursing, McGill Univ, Montreal, Canada.
¹⁶ McGill University, Montreal, Quebec, Canada.
¹⁷ Radboud University Medical Center and Sint Maartenskliniek, Nijmegen, The Netherlands.
¹⁸ University of Michigan, Ann Arbor, MI, USA.
¹⁹ Université Paris Descartes, Paris, France.
²⁰ St. Joseph's Health Care, London, Ontario, Canada.
²¹ Scleroderma Foundation, Danvers, MA, USA.
²² Scleroderma Society of Ontario, Hamilton, Canada.
²³ Johns Hopkins University School of Medicine, Baltimore, MD, USA.
²⁴ Université Paris Descartes and Assistance Publique-Hôpitaux de Paris, France.
²⁵ University of Minho, Braga, Portugal.
²⁶ Université du Quebec à Montréal, Canada.
²⁷ Sint Maartenskliniek, Nijmegen, The Netherlands.
²⁸ Scleroderma Society, London, UK.
²⁹ University of Utah, Salt Lake City, Utah, USA.
³⁰ Association des Sclérodermiques de France, Sorel-Moussel, France.
³¹ New York University, New York, USA.
³² Midwestern University, Downers Grove, IL, USA.
³³ Federation of European Scleroderma Associations, Dublin, Ireland.
³⁴ McMaster University, Hamilton, Ontario, Canada.
³⁵ Memorial University, St. John's, Newfoundland, Canada.
³⁶ University of New Mexico, Albuquerque, NM, USA.
³⁷ University of Western Ontario, London, Canada.
³⁸ Asociación Española de Esclerodermia, Madrid, Spain.
³⁹ Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico.
⁴⁰ Leiden University Medical Center and Haga Teaching Hospital, the Hague, Leiden, The Netherlands.
⁴¹ Jewish General Hospital and McGill University, Montréal, Quebec, Canada.
⁴² University of Texas MD Anderson Cancer Center, Houston, TX, USA.
⁴³ NVLE Dutch Patient Organisation for Systemic Autoimmune Diseases, Utrecht, The Netherlands.
⁴⁴ Canadian Organisation for Rare Disorders, Toronto, Ontarion, Canada.
⁴⁵ Université Laval, Quebec, Canada.
⁴⁶ Sherbrooke University, Quebec, Canada.
⁴⁷ Servicio de Reumatologia del Hospital 12 de Octubre, Madrid, Spain.
⁴⁸ Stanford University, Stanford, CA, USA.
⁴⁹ Royal Free London Hospital, London, UK.
⁵⁰ University of Pittsburgh, PA, USA.
⁵¹ St. Paul's Hospital and University of British Columbia, Vancouver, BC, Canada.
⁵² Hospital for Special Surgery, New York, USA.
⁵³ University of Manchester, Salford Royal NHS Foundation Trust, Manchester, UK.
⁵⁴ Salford Royal NHS Foundation Trust, Salford, UK.
⁵⁵ Northwestern University, Chicago, IL, USA.
⁵⁶ University of Alberta, Edmonton, Canada.
⁵⁷ University of California, Los Angeles, CA, USA.
⁵⁸ University of Manitoba, Winnipeg, Canada.
⁵⁹ University of Ottawa, Ontario, Canada.
⁶⁰ Dalhousie University, Halifax, Nova Scotia, Canada.
⁶¹ Southlake Regional Health Centre, Newmarket, Ontario, Canada.

PMID: 27494308

Abstract

Objectives: Appearance concerns are common in systemic sclerosis (SSc) and have been linked to younger age and more severe disease. No study has examined their association with sex or race/ethnicity.

Methods: SSc patients were sampled from the Scleroderma Patient-centered Intervention Network Cohort. Presence of appearance concerns was assessed with a single item, and medical and sociodemographic information were collected.

Results: Of 644 patients, appearance concerns were present in 72%, including 421 of 565 women (75%), 42 of 79 men (53%), 392 of 550 patients who identified as White (71%), 35 of 41 who identified as Black (85%), and 36 of 53 who identified as another race/ethnicity (68%). In multivariate analysis, women had significantly greater odds of reporting appearance concerns than men (odds ratio (OR)=2.97, 95% confidence interval (CI)=1.78-4.95, p<.001). Black patients had significantly greater odds of appearance concerns than White patients in unadjusted (OR=2.64, 95% CI=1.01-6.34, p=.030), but not multivariate analysis (OR=1.76, 95% CI=0.67-4.60, p=.250). Compared to a general population sample, appearance concerns were substantially more common in SSc, particularly for men across all age groups and for younger women. The most commonly reported features of concern were related to the face and head, followed by the hands and fingers; this did not differ by sex or race/ethnicity.

Conclusions: Appearance concerns were common in SSc. Women were substantially more likely than men to have appearance concerns. Although non-significant in multivariate analysis, Black patients were more likely to have concerns than White patients, likely due to more severe changes in appearance.

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Examination of the association of sex and race/ethnicity with appearance concerns: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study

Collaborators

Affiliations

Examination of the association of sex and race/ethnicity with appearance concerns: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study

Authors

Collaborators

Affiliations

Abstract

Publication types

MeSH terms

LinkOut - more resources

Full Text Sources

Medical