Our research team is studying quality of life in systemic sclerosis. We are collaborating on three different projects (described below). For a recent review of quality of life in systemic sclerosis, please see:
Malcarne, V. L., Fox, R. S., Mills, S. D., & Gholizadeh, S. (2013). Psychosocial aspects of systemic sclerosis. Clinical Opinions in Rheumatology. 25, 707-713.
Scleroderma Patient-Centered Intervention Network (SPIN)
The SPIN is an international team of patients, researchers, physicians, and methodologists working to develop web-based interventions across various areas, including depression, hand function, self-management of disease, and body image. The goal of SPIN is to develop, test, and disseminate adjunctive care interventions aimed at quality of life improvement across these domains to patients with scleroderma around the world. The San Diego team is working on the body image intervention, which is designed for patients with scleroderma experiencing body image distress and has aims of improving both satisfaction with appearance and social functioning.
Representative Publications:
Jewett, L. R., Hudson, M., Malcarne, V. L., Baron, M., & Thombs, B. D. (2012). Sociodemographic and disease correlates of body image distress among patients with systemic sclerosis. PLoS ONE, 7, e33281.
Thombs, B. D., van Lankveld, W., Bassel, M., Baron, M., Buzza, R., Haslam, S., Haythornthwaite, J. A., Hudson, M., Jewett, L. R., Khanna, D., Khafo, R., Kwakkenbos, L., Malcarne, V. L., Milette, K., Motivola, S., Newton, E. G., Nielson, W., Pacy, M., Razykov, I., Schieir, O., Taillefer, S., & Worron-Sauve, M. (2010). Psychological health and well-being in systemic sclerosis: State of the science and consensus research agenda. Arthritis Care & Research, 62, 1181-1189.
UCLA Scleroderma Quality of Life Study
The UCLA Scleroderma Quality of Life study is collecting extensive medical and psychosocial data on a cohort of patients with systemic sclerosis. The San Diego research team members are collaborating with UCLA on analysis of psychosocial correlates and outcomes.
Representative Publications:
Merz, E. L., Malcarne, V. L., Hansdottir, I., Furst, D. E., Clements, P. J., & Weisman, M. H. (2009). A longitudinal analysis of humor coping in adjustment to systemic sclerosis. Psychology, Health & Medicine, 14, 553-566.
Khanna, D., Furst, D. E., Clements, P. J., Denton, C. P., Giannini E., Lovell D. E. et al. (2008). Development of a provisional core set of response measures for clinical trials of systemic sclerosis. Annals of the Rheumatic Diseases, 67, 703-709.
GENISOS
The Genetics versus Environment in Scleroderma Outcome Study (GENISOS) is a prospective, observational study of a multiethnic cohort of patients with early systemic sclerosis. GENISOS is being conducted at the University of Texas Health Science Center. Approximately 250 patients have been enrolled to date. The San Diego research team members are collaborating with GENISOS on analysis of psychosocial outcomes.
Representative Publications:
Merz, E. L., Malcarne, V. L., Assassi, S., Nair, D. K., Graham, T. A., Yellman, B. P., Estrada-Y-Martin, R. M., & Mayes, M. D. (in press). Biopsychosocial typologies of pain in a cohort of patients with systemic sclerosis. Arthritis Care & Research.
Merz, E. L., Malcarne, V. L., Roesch, S., Sharif, R., Harper, B., Draeger, H., Gonzalez, E., Deepthi, N., McNearney, T. A., Assassi, S., & Mayes, M. (2013). Measuring illness behavior in patients with systemic sclerosis. Arthritis Care & Research, 65, 585-593.