New research has found that a child's symptoms and the doctor they are referred by can affect the time taken to diagnose juvenile systemic lupus erythematosus (JSLE). The research, which shows substantial disparities in the time to diagnosis for JSLE in the UK, was published in the peer-reviewed journal Rheumatology.
Typically the time between symptom onset and diagnosis of JSLE is 4-5 months, but the research found that diagnosis can take much longer for some children. JSLE children often face multiple referrals to different healthcare professionals before accessing the specialist paediatric rheumatology care they need. Diagnosing JSLE is challenging because its symptoms are broad-based and vary: they can include non-specific symptoms such as fatigue, mouth ulcers, headaches and arthralgia to life threatening renal, blood and nervous system disorders. Often diagnosis depends upon a clinician's awareness and experience of referring lupus cases, which is often minimal for paediatric rheumatic diseases.
Using information from paediatric rheumatology centres across the UK the research found that a child's ethnicity, having lupus nephritis, and whether they are referred by a paediatrician can shorten the time taken to diagnose JSLE.
Particularly in JSLE, where major organ involvement is more common than in adult SLE and damage accrues more quickly, early diagnosis is important to improve quality of life for patients and save lives.
Rheumatic conditions can cause damage to vital organs, including the lungs, heart, nervous system, kidneys, skin and eyes. It is crucial that patients get appropriate treatment in the first weeks and months following the onset of rheumatic disease symptoms to improve outcomes and quality of life, reduce medical costs, long term disability and work limitations. With all rheumatic conditions, early diagnosis is invaluable to ensure disease-modifying anti-rheumatic drugs can be prescribed within the window of opportunity for treatment.
Previous research has shown that delays in diagnosis are also common in juvenile idiopathic arthritis and rheumatoid arthritis. GPs and paediatric trainees have been shown to display poor confidence in paediatric musculoskeletal assessment and a lack of awareness in children and young people.
Editor of Rheumatology Professor Robert Moots said: "This study highlights the importance of recognising JSLE and preventing the problems that can occur when diagnosis is delayed."
Lead researcher Eve Smith, said: 'This study provides important insights into the challenges facing healthcare professionals in recognising and arriving at a diagnosis of JSLE. Future studies combining qualitative and quantitative methodologies are warranted to improve our understanding of the barriers and facilitators to accessing appropriate specialist heath care'.
Dr Chris Deighton, President of the British Society for Rheumatology, said: "We know early diagnosis improves patients' quality of life and The British Society for Rheumatology has been working hard on its 'Simple Tasks' campaign to highlight the importance of early diagnosis in rheumatic conditions."