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Rheumatology

A GOSH patient and Occupational Therapist's hands
A GOSH patient and Occupational Therapist's hands

Overview

The Rheumatology department is the largest paediatric rheumatology department in the UK, and a pioneering centre for research into musculoskeletal conditions.

The department treats patients with arthritis and other inflammatory conditions. We have a special interest in the treatment of children’s.

The team consists of doctors, physiotherapists, occupational therapists, psychologists, podiatrists and nurses who all work together to support our patients and their families. We also work closely with other specialist departments within the hospital including Infectious Diseases, Immunology and Nephrology. 

Outcomes

Cryopyrin-Associated Periodic Fever Syndrome (CAPS) is an autosomal dominant genetic inflammatory disorder caused by excessive production by the immune system of an inflammatory hormone (cytokine) called interleukin-1. The CAPS clinic at GOSH was established in January 2011. 

GOSH specialists monitor eye involvement, hearing involvement, and neurological involvement - all important complications of CAPS in some patients. To make our system even more efficient and cost effective, we are establishing a dedicated pharmacist to prepare exact paediatric doses of Canakinumab in advance for individual children. This saves many tens of thousands of pounds per annum since vials of expensive drug can be used more efficiently, and the patient journey through the clinic can be optimised.

CAPS clinical outcomes

When assessing the response to these treatments, we apply a clinical score: the CAPS disease activity score (CAPS DAS). A score of 3 or less out of 20 indicates minimal or no clinical disease activity; higher scores indicate active disease. In addition, we routinely measure an inflammatory marker in the blood called serum amyloid A (SAA). Levels less than 10 are normal; higher levels may indicate that the disease is not sufficiently under control, even if there are few or no clinical symptoms.

We thus report the important summary outcome measures for the CAPS clinic at GOSH for current patients on active treatment: percentage of patients with disease activity score of 3 or less; percentage of patients with serum amyloid A less than 10; percentage of patients with both disease activity score less than 3 and normal serum amyloid A levels. 

  • Before treatment, 4% of the patients had a CAPS (Cryopyrin-Associated Periodic Fever Syndrome) DAS score of 3 or below. This means almost all patients had active disease. After treatment, 89% of patients were in clinical remission with a score of 3 or less. 

  • Prior to treatment, 43% of patients had abnormally high levels of SAA, meaning that their disease was not under control. After treatment with IL-1 blockade, 75% of patients had achieved normal SAA levels, indicating that their disease and related symptoms were under control. 

  • This graph shows that only 4% of patients had both normal CAPS DAS scores and SAA level pre-treatment. However, once on treatment, 71% of patients were normal on both their CAPS DAS scores and their SAA levels. 

Conditions we treat

  • Juvenile idiopathic arthritis 
  • Arthritis associated with other chronic diseases 
  • Scleroderma 
  • Juvenile dermatomyositis 
  • Vasculitides, including Kawasaki disease and polyarteritis nodosa 
  • Systemic lupus erythematosus 
  • Overlap connective tissue disease 
  • Chronic infantile neurological cutaneous and articular syndrome 
  • Chronic recurrent multifocal osteomyelitis 
  • Chronic pain syndrome 
  • Complex regional pain syndrome 
  • Joint hypermobility syndrome 
  • Ehlers-Danlos syndrome 
  • Periodic fever syndromes including Familial Mediterranean fever, Cryopyrin-Associated Periodic Syndrome and other genetic periodic fevers 
  • Mixed connective tissue disease 
  • Overlap connective tissue disease 
  • Reflex sympathetic dystrophy 
  • Benign joint hypermobility syndrome 
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