RESUMO
BACKGROUND: Among patients with systemic sclerosis (SSc), early recognition of potentially life-threatening organ involvement is critical. Because prompt recognition of early signs of organ involvement can dramatically alter a patient׳s outcome, it is crucial that patients and primary care providers (PCPs) recognize these symptoms. We conducted a survey of patients with SSc regarding their perceptions of the quality of their primary care, and whether or not they perceive the quality of their primary care to be impaired by their scleroderma diagnosis. MATERIALS AND METHODS: A mail survey was sent to 525 patients with SSc seen at the Medical University of South Carolina. Questionnaire items addressed demographics and perceptions of their quality of their primary care. RESULTS: Of n = 140 respondents, most (74.5%) did not feel as though their diagnosis of SSc has resulted in barriers to appropriate or satisfactory care, and most (81.3%) answered that they had not ever felt as though their medical concerns were not being addressed because they had SSc. Perceptions of barriers were significantly (P < 0.05) associated with female sex and younger age, along with poorer overall quality of care and satisfaction with their primary care. CONCLUSIONS: Most patients with SSc value the quality of their primary care. However, some patients with SSc feel that their PCPs do not adequately monitor their blood pressure, reflux symptoms or shortness of breath. These results highlight the importance of PCPs in the overall care of patients with SSc and the need for continued education regarding close monitoring of signs and symptoms suggestive of possible life-threatening internal organ involvement.
