Scleroderma: health services utilization from patients' perspective.

OBJECTIVE: To evaluate utilization of the health care system by patients with scleroderma by determining which physicians are diagnosing and following patients, what tests are being used, and what is the time to diagnosis, as measured over the past 3 decades.
METHODS: A self-administered questionnaire (available in English and French) was mailed up to twice to 1,437 members of 12 provincial chapters of the Scleroderma Society of Canada.
RESULTS: The overall response rate was 63%. Eighty-nine percent of respondents were female. Sixty percent were between the ages of 30 and 59 years. Forty-three percent were diagnosed by a rheumatologist. Among patients with diffuse disease, 90% have been followed by a rheumatologist; however just over half of patients have seen a gastroenterologist (54%), cardiologist (51%), respirologist (67%), and less than half have seen a dermatologist (42%), nephrologist (13%), physiotherapist (46%), or occupational therapist (34%). The mean time to diagnosis over the last 3 decades is 2.4 years. At diagnosis less than 50% of patients had an electrocardiogram, echocardiogram, gastroscopy, thorax CT, or skin thickness measurements, whereas over 50% of patients had a chest radiograph and pulmonary function testing.
CONCLUSION: Less than half of patients were diagnosed by a rheumatologist, and time to diagnosis from onset of symptoms has remained unchanged over the last 3 decades. Despite their complex, multisystemic disease, less than 50% of patients see sub-specialists or had baseline screening tests for organ involvement of their systemic sclerosis. Further research is needed on health services utilization and on determinants of access to care by patients with scleroderma.