https://ogma.newcastle.edu.au/vital/access/ /manager/Index en-au 5 https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:35200 Wed 26 Jun 2019 15:26:11 AEST ]]> https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:32059 n=83) of the surveyed cohort, and 41.2% (n=61) saw four or more different clinicians before diagnosis. Between symptom onset and final diagnosis, 42.6% (n=63) of participants reported a delay of 5 months or more, and 16.9% (n=25) waited longer than 12 months. Eventually, 91% (n=134) were referred to a paediatric rheumatologist and 63.5% (n=94) were seen within 4 weeks from initial referral. More than half the respondents felt that general practitioners (GPS) and general paediatricians were not aware of RD. Overall, respondents felt that improved knowledge of PR diseases among GPS, improved access to PR clinics, improved educational materials for patients and families, access to speciality rheumatology nurses and coordinated rheumatology teams would have significantly improved the experience of their child's disease. Conclusions: Children with RD in NSW still experience significant delays from symptom onset to final diagnosis through consultations with multiple healthcare professionals. Multidisciplinary team care was not the norm for this patient group, despite established national and international management standards. What is known about the topic? Early diagnosis and management by a multidisciplinary team is the gold standard in PR management. Delays in diagnosis may significantly impair the outcomes of children diagnosed with RD, with reduced quality of life, increased pain level and worse long-term prognosis. What does this paper add? Children diagnosed with RD in NSW endure significant delays from symptom onset until a final diagnosis is made, with multiple consultations with different healthcare professionals. When the referral to PR services in NSW is made, RD children are mostly seen within 4 weeks, faster than other international standards. GPS and paediatric rheumatologists in NSW helped improve the children's and their family's experience of the diagnosis and treatment of a rheumatic condition and better informed them using appropriate educational materials. What are the implications for practitioners' This paper provides new evidence to practitioners to increase their knowledge of the current experiences and expectation of the paediatric rheumatology care in NSW.]]> Thu 26 Apr 2018 14:45:52 AEST ]]> https://ogma.newcastle.edu.au/vital/access/ /manager/Repository/uon:5136 Sat 24 Mar 2018 07:49:39 AEDT ]]>