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Related Experiment Videos

Scleroderma: health services utilization from patients' perspective.

Sindhu R Johnson1, Simon Carette, James V Dunne

  • 1Division of Rheumatology, University Health Network, University of Toronto, Ontario, Canada.

The Journal of Rheumatology
|June 7, 2006
PubMed
Summary
This summary is machine-generated.

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Scleroderma diagnosis by rheumatologists is low, with no improvement in diagnosis time over 30 years. Many patients lack sub-specialist care and baseline organ screening despite complex, multisystemic disease.

Area of Science:

  • Rheumatology
  • Health Services Research
  • Systemic Sclerosis

Background:

  • Scleroderma is a complex, multisystemic autoimmune disease.
  • Understanding healthcare utilization is crucial for improving patient outcomes.

Purpose of the Study:

  • To evaluate healthcare system utilization by scleroderma patients.
  • To identify physicians diagnosing and managing scleroderma.
  • To assess diagnostic timelines and utilized tests over three decades.

Main Methods:

  • A self-administered questionnaire was mailed to 1,437 members of the Scleroderma Society of Canada.
  • The questionnaire was sent up to twice and was available in English and French.
  • A response rate of 63% was achieved.

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Main Results:

  • Only 43% of patients were diagnosed by a rheumatologist.
  • The mean time to diagnosis remained 2.4 years over three decades.
  • Less than 50% of patients underwent baseline screening tests for organ involvement.

Conclusions:

  • Diagnosis by rheumatologists and timely diagnosis remain challenges for scleroderma patients.
  • Sub-specialist involvement and baseline organ screening are suboptimal.
  • Further research is needed on health services utilization and access to care.