Survey of parent and carer experiences and expectations of paediatric rheumatology care in New South WalesAndrea Coda A F , Julie Jones B , Debra Grech C and Davinder Singh-Grewal D E
A University of Newcastle, Faculty of Health and Medicine, School of Health Sciences, Health Precinct, BE154, PO Box 127, Ourimbah, NSW, 2258, Australia.
B Discipline of Paediatrics and Child Health, The University of Sydney, NSW 2006, Australia. Email: firstname.lastname@example.org
C Sydney Children Hospital (SCH) Randwick, High Street, Randwick, NSW 2031, Australia. Email: Debra.Grech@sesiahs.health.nsw.gov.au
D The University of Sydney, NSW 2006, Australia. Email: email@example.com
E The University of NSW, Sydney, NSW 2052, Australia.
F Corresponding author. Email: Andrea.Coda@newcastle.edu.au
Australian Health Review - https://doi.org/10.1071/AH16061
Submitted: 29 February 2016 Accepted: 6 June 2016 Published online: 29 July 2016
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.
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.
Additional keywords: adolescent, child, multidisciplinary, rheumatic diseases.
References Ravelli A, Martini A. Juvenile idiopathic arthritis. Lancet 2007; 369 767–78.
| Juvenile idiopathic arthritis.CrossRef | 1:CAS:528:DC%2BD2sXisVWhs7Y%3D&md5=989bd6986da40cd1a385d856320c6f2cCAS | 17336654PubMed |
 Australian Institute of Health and Welfare (AIHW). Juvenile arthritis in Australia. Canberra: AIHW; 2008.
 Huber A, Feldman BM. Long-term outcomes in juvenile dermatomyositis: how did we get here and where are we going? Curr Rheumatol Rep 2005; 7 441–6.
| Long-term outcomes in juvenile dermatomyositis: how did we get here and where are we going?CrossRef | 16303103PubMed |
 Kamphuis S, Silverman ED. Prevalence and burden of pediatric-onset systemic lupus erythematosus. Nat Rev Rheumatol 2010; 6 538–46.
| Prevalence and burden of pediatric-onset systemic lupus erythematosus.CrossRef | 1:CAS:528:DC%2BC3cXhtV2is77K&md5=0de276941edfcfa24374ae4592493b0cCAS | 20683438PubMed |
 Batthish M, Feldman BM. Juvenile dermatomyositis. Curr Rheumatol Rep 2011; 13 216–24.
| Juvenile dermatomyositis.CrossRef | 21312074PubMed |
 Hazel E, Zhang X, Duffy CM, Campillo S. High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol Online J 2010; 8 2
| High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis.CrossRef | 20148143PubMed |
 McDonagh JE. Transition of care from paediatric to adult rheumatology. Arch Dis Child 2007; 92 802–7.
| Transition of care from paediatric to adult rheumatology.CrossRef | 17715444PubMed |
 Munro JE, Murray KJ. Advances in paediatric rheumatology: beyond NSAIDs and joint replacement. J Paediatr Child Health 2004; 40 161–9.
| Advances in paediatric rheumatology: beyond NSAIDs and joint replacement.CrossRef | 1:STN:280:DC%2BD2c3kvVeqtA%3D%3D&md5=505f8618635e574ab373a1fa65d69055CAS | 15009542PubMed |
 Wallace CA. Current management of juvenile idiopathic arthritis. Best Pract Res Clin Rheumatol 2006; 20 279–300.
| Current management of juvenile idiopathic arthritis.CrossRef | 16546057PubMed |
 Goldmuntz EA, White PH. Juvenile idiopathic arthritis: a review for the pediatrician. Pediatr Rev 2006; 27 e24–32.
| Juvenile idiopathic arthritis: a review for the pediatrician.CrossRef | 16581950PubMed |
 Cakmak A, Bolukbas N. Juvenile rheumatoid arthritis: physical therapy and rehabilitation. South Med J 2005; 98 212–6.
| Juvenile rheumatoid arthritis: physical therapy and rehabilitation.CrossRef | 15759952PubMed |
 Foster H, Rapley T. Access to pediatric rheumatology care: a major challenge to improving outcome in juvenile idiopathic arthritis. J Rheumatol 2010; 37 2199–202.
| Access to pediatric rheumatology care: a major challenge to improving outcome in juvenile idiopathic arthritis.CrossRef | 21041261PubMed |
 Tzaribachev N, Benseler SM, Tyrrell PN, Meyer A, Kuemmerle-Deschner JB. Predictors of delayed referral to a pediatric rheumatology center. Arthritis Rheum 2009; 61 1367–72.
| Predictors of delayed referral to a pediatric rheumatology center.CrossRef | 1:STN:280:DC%2BD1MnovVShtw%3D%3D&md5=bb30f67427beea2fe579243fb0fecadbCAS | 19790121PubMed |
 Fisler RE, Liang MG, Fuhlbrigge RC, Yalcindag A, Sundel RP. Aggressive management of juvenile dermatomyositis results in improved outcome and decreased incidence of calcinosis. J Am Acad Dermatol 2002; 47 505–11.
| Aggressive management of juvenile dermatomyositis results in improved outcome and decreased incidence of calcinosis.CrossRef | 12271292PubMed |
 Fantini F, Gerloni V, Gattinara M, Cimaz R, Arnoldi C, Lupi E. Remission in juvenile chronic arthritis: a cohort study of 683 consecutive cases with a mean 10 year followup. J Rheumatol 2003; 30 579–84.
| 12610820PubMed |
 Royal Australian College of General Practitioners (RACGP). Clinical guideline for the diagnosis and management of juvenile idiopathic arthritis. Melbourne: RACGP; 2009.
 Manners PJ. Delay in diagnosing juvenile arthritis. Med J Aust 1999; 171 367–9.
| 1:STN:280:DC%2BD3c%2FlvVantQ%3D%3D&md5=f8802356cd04496a70575f0c50bee89fCAS | 10590726PubMed |
 Davies K, Cleary G, Foster H, Hutchinson E, Baildam E. BSPAR standards of care for children and young people with juvenile idiopathic arthritis. Rheumatology 2010; 49 1406–8.
| BSPAR standards of care for children and young people with juvenile idiopathic arthritis.CrossRef | 20173199PubMed |
 Munro J, Murray K, Boros C, Chaitow J, Allen R, Akikusa J, Adib N, Piper SE, Singh-Grewal D, on behalf of the Australian Paediatric Rheumatology Group Australian Paediatric Rheumatology Group standards of care for the management of juvenile idiopathic arthritis. J Paediatr Child Health 2014; 50 663–6.
| Australian Paediatric Rheumatology Group standards of care for the management of juvenile idiopathic arthritis.CrossRef | 25156704PubMed |
 Bonds E, Mychaleckyj J, Watkins R, Palla S, Extrom P. Ambulatory care skills: do residents feel prepared? Med Educ Online 2002; 7 7
 Pinney SJ, Regan WD. Educating medical students about musculoskeletal problems. Are community needs reflected in the curricula of Canadian medical schools? J Bone Joint Surg Am 2001; 83-A 1317–20.
| 1:STN:280:DC%2BD3MritV2ktg%3D%3D&md5=0ff72e7729f0795a5dfe6bc7bfa44339CAS | 11568192PubMed |
 Jandial S, Rapley T, Foster H. Current teaching of paediatric musculoskeletal medicine within UK medical schools: a need for change. Rheumatology 2009; 48 587–90.
| Current teaching of paediatric musculoskeletal medicine within UK medical schools: a need for change.CrossRef | 19336576PubMed |
 Foster HE, Kay LJ, Friswell M, Coady D, Myers A. Musculoskeletal screening examination (pGALS) for school-age children based on the adult GALS screen. Arthritis Rheum 2006; 55 709–16.
| Musculoskeletal screening examination (pGALS) for school-age children based on the adult GALS screen.CrossRef | 1:STN:280:DC%2BD28njtVOjtg%3D%3D&md5=2d76a65558ee3959b16a394b08d557d3CAS | 17013854PubMed |
 Bain L, Mierdel S, Thorne C. Modeling best practices in chronic disease management: the Arthritis Program at Southlake Regional Health Centre. J Allied Health 2012; 41 83–7.
 Tong A, Jones J, Speerin R, Filocamo K, Chaitow J, Singh-Grewal D. Consumer perspectives on pediatric rheumatology care and service delivery: a qualitative study. J Clin Rheumatol 2013; 19 234–40.
| Consumer perspectives on pediatric rheumatology care and service delivery: a qualitative study.CrossRef | 23872547PubMed |