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

Lisa R. Jewett, Linda Kwakkenbos, Marie Eve Carrier, Vanessa L. Malcarne, Susan J. Bartlett, Daniel E. Furst, Karen Gottesman, Maureen D. Mayes, Shervin Assassi, Diana Harcourt, Heidi Williamson, Sindhu R. Johnson, Annett Körner, Virginia Steen, Rina S. Fox, Shadi Gholizadeh, Sarah D. Mills, Jacqueline C. Molnar, Danielle B. Rice, Brett D. ThombsMurray Baron, Frank van den Hoogen, Dinesh Khanna, Luc Mouthon, Warren R. Nielson, Serge Poiraudeau, Robert Riggs, Maureen Sauve, Fredrick Wigley, Isabelle Boutron, Angela Costa Maia, Ghassan El-Baalbaki, Carolyn Ells, Cornelia van den Ende, Kim Fligelstone, Catherine Fortune, Tracy Frech, Dominique Godard, Daphna Harel, Marie Hudson, Ann Impens, Yeona Jang, Ann Tyrell Kennedy, Maggie Larche, Catarina Leite, Carlo Marra, Karen Nielsen, Janet L. Poole, Janet Pope, Alexandra Portales, SPIN Investigators

Research output: Contribution to journalArticlepeer-review


Objective. 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 < 0.001). Black patients had significantly greater odds of appearance concerns than White patients in unadjusted (OR=2.64, 95% CI=1.01-6.34, p=0.030), but not multivariate analysis (OR=1.76, 95% CI=0.67-4.60, p=0.250). 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. Conclusion. Appearance concerns were common in SSc. Women were substantially more likely than men to have appearance concerns. Although nonsignificant in multivariate analysis, Black patients were more likely to have concerns than White patients, likely due to more severe changes in appearance.

Original languageEnglish (US)
Pages (from-to)92-99
Number of pages8
JournalClinical and Experimental Rheumatology
StatePublished - 2016


  • Appearance concerns
  • Race/ethnicity
  • Sex
  • Systemic sclerosis

ASJC Scopus subject areas

  • Rheumatology
  • Immunology and Allergy
  • Immunology


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