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MARIA E. SUAREZ-ALMAZOR, MICHAEL A. KALLEN, AIMEE K. ROUNDTREE, and MAUREEN MAYES

ABSTRACT.

Objective. Studies of systemic sclerosis (SSc) have enlisted measures of physical function and generic health-related quality of life in order to determine health status. However, the measurements obtained may not discriminate other essential quality of life (QOL) domains important to patients with SSc. Our study used qualitative methods to evaluate patients' assessment of disease and symptom burden in SSc.

Methods. We conducted 3 focus groups and 5 in-depth interviews of patients with SSc. Guiding questions were based on 5 themes: patient awareness, SSc-related problems, disease activity and progression, symptoms, and expectations. Thematic analysis was conducted using qualitative, grounded theory methodologies.

Results. Symptoms such as pain (localized or generalized), fatigue, and malaise were reported to have major influence on daily activities and QOL. Gastrointestinal symptoms were among the worst prevalent and disruptive physical problems. All participants reported significant disruptions in their social lives, a burden considered by many as the worst consequence of their disease. All expressed major effects on their overall well-being because of emotional distress, including depression, low self-esteem, concerns with physical appearance, and uncertainty about future outcomes.

Conclusion. Patients with SSc report significant symptomatic and emotional burdens, which, in turn, affect their QOL and psychological well-being. Additional research and fuller awareness of the disease and symptom-related burdens experienced by patients with SSc may lead to additional relevant outcome measures and more effective overall treatment programs. (First Release July 1 2007; J Rheumatol 2007;34:1718-26)

Key Indexing Terms:

SYSTEMIC SCLEROSIS
QUALITATIVE RESEARCH
QUALITY OF LIFE

From the University of Texas M.D. Anderson Cancer Center, Houston, Texas; Baylor College of Medicine, Houston, Texas; University of Houston–Downtown, Houston, Texas; and the University of Texas Health Sciences Center, Houston, Texas, USA.

Supported by a grant from the Scleroderma Foundation. Dr. Suarez-Almazor has a K24 career award from the National Institutes of Arthritis, Musculoskeletal and Disease Disorders.

M.E. Suarez-Almazor, MD, PhD, University of Texas M.D. Anderson Cancer Center; M.A. Kallen, PhD, MPH, Baylor College of Medicine; A.K. Roundtree, PhD, University of Texas M.D. Anderson Cancer Center, University of Houston–Downtown; M. Mayes, MD, University of Texas Health Sciences Center.

Address reprint requests to Dr. M.E. Suarez-Almazor, The University of Texas M.D. Anderson Cancer Center, 1400 Holcombe Boulevard, Houston, TX 77030, USA. E-mail: MSAlmazor@mdanderson.org

Accepted for publication March 21, 2007.