Survey of parent and carer experiences and expectations of paediatric rheumatology care in New South Wales.

Objective. The aim of the present survey of parent and carers was to document the level of care and services currently provided to children diagnosed with rheumatic diseases (RD) in New South Wales (NSW), Australia. Methods. The survey included parents and carers of children presenting to paediatric rheumatology (PR) services in NSW. Subjects attending PR clinics in both public and private settings were invited to participate in an online or paper survey. Results. Overall, 148 surveys were completed. The process of obtaining the diagnosis of RD was described as being 'difficult' or 'very difficult' by 56.1% (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. [ABSTRACT FROM AUTHOR]