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Scleroderma: Health Services Utilization from Patients' Perspective
SINDHU R. JOHNSON, SIMON CARETTE, and JAMES V. DUNNE ABSTRACT. Objectives. 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 1437 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. (J Rheumatol 2006;33:1123–7) Key Indexing Terms:
SYSTEMIC SCLEROSIS
From the Division of Rheumatology, University Health Network, University of Toronto, Toronto, Ontario and the Division of Rheumatology and Internal Medicine, Department of Medicine, St. Paul's Hospital, University of British Columbia, Vancouver, British Columbia, Canada. Dr. Johnson is the recipient of a research fellowship award from The Arthritis Society of Canada and the Institute for Musculoskeletal Health and Arthritis, Canadian Institutes for Health Research. Actelion Canada provided financial support to the Scleroderma Society of Canada for costs incurred for questionnaire mailing and French translation of the questionnaire. S.R. Johnson, MD, FRCPC; S. Carette, MD, FRCPC, Division of Rheumatology, University Health Network, University of Toronto; J.V. Dunne, MB, FRCPC, Division of Rheumatology and Internal Medicine, Department of Medicine, St. Paul's Hospital, University of British Columbia. Address reprint requests to Dr. J. Dunne, Department of Medicine, St. Paul's Hospital, Vancouver, BC, Canada, V6Z 1Y6. E-mail: James.Dunne@VCH.ca Accepted for publication January 5, 2006.
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