Abstract
Purpose Juvenile Systemic Sclerosis (JSS) is a rare, complex disease. Usually, patients with JSS receive specialized care from a multidisciplinary team in tertiary hospitals. In order to deliver high standard care, systematic clinical practice strategies should be designed. Based on these premises, we developed a JSS Clinic in the year 2008. Objective: To describe the structure and process of a JSS interdisciplinary Clinic, as well as outcomes observed. Methods During the period 2008-2010, patients with a diagnosis of JSS entered a structured follow-up in a dedicated clinic. Disease-specific guidelines and outcome measures were designed and applied. An interdisciplinary team was formed under the leadership of a pediatric rheumatologist: pediatricians, pediatric dermatologists, neurologists, pulmonologists, cardiologists, social workers, nutritionists, kinesiologists , psychiatrists and nurses. The team gathered in the Day Hospital facility of a tertiary pediatric hospital. Prior to the clinic day, short
Highlights
Juvenile Systemic Sclerosis (JSS) is a rare, complex disease
From 2011 Pediatric Rheumatology Symposium sponsored by the American College of Rheumatology Miami, FL, USA. 2-5 June 2011
We developed a JSS Clinic in the year 2008
Summary
From 2011 Pediatric Rheumatology Symposium sponsored by the American College of Rheumatology Miami, FL, USA. 2-5 June 2011. From 2011 Pediatric Rheumatology Symposium sponsored by the American College of Rheumatology Miami, FL, USA. Purpose Juvenile Systemic Sclerosis (JSS) is a rare, complex disease. Patients with JSS receive specialized care from a multidisciplinary team in tertiary hospitals. In order to deliver high standard care, systematic clinical practice strategies should be designed. Based on these premises, we developed a JSS Clinic in the year 2008. Objective: To describe the structure and process of a JSS interdisciplinary Clinic, as well as outcomes observed
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