title: Disease and symptom burden in systemic sclerosis: a patient perspective.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: University of Texas M.D. Anderson Cancer Center, Houston, Texas 77030, USA. MSAlmazor@mdanderson.org
authors.forename: Maria E
authors.initials: ME
authors.lastname: Suarez-Almazor
authors.forename: Michael A
authors.initials: MA
authors.lastname: Kallen
authors.forename: Aimee K
authors.initials: AK
authors.lastname: Roundtree
authors.forename: Maureen
authors.initials: M
authors.lastname: Mayes
mesh_terms: D000328:Adult; D017281:Cost of Illness; D018450:Disease Progression; D004644:Emotions; D005260:Female; D017144:Focus Groups; D006801:Humans; D007398:Interpersonal Relations; D007407:Interviews as Topic; D008019:Life Style; D008297:Male; D008393:Marriage; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D010361:Patients / Q000523:psychology*; D011788:Quality of Life; D012595:Scleroderma, Systemic / Q000150:complications / Q000503:physiopathology* / Q000523:psychology*