Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on sleep in brain health

LIVE: Thursday 2nd May 2024, 18:00-19:30 (CEST)

Quality sleep is essential for health. But what happens to our brains when sleep patterns are disturbed? Join our experts to explore the interplay between sleep disruption and neurological diseases, and the questions that you need to be asking your patients to help you prevent the harmful effects of sleep deprivation.
ADVANCED SEARCH
Log in
Top
Pediatric Rheumatology
Published in: Pediatric Rheumatology 1/2020

01-12-2020 | Juvenile Rheumatoid Arthritis | Research article

Factors impacting referral of JIA patients to a tertiary level pediatric rheumatology center in North India: a retrospective cohort study

Authors: Manjari Agarwal, Caroline Freychet, Sumidha Jain, Abhay Shivpuri, Anju Singh, Veronique Dinand, Sujata Sawhney

Published in: Pediatric Rheumatology | Issue 1/2020

Login to get access

Abstract

Background

JIA studies demonstrate that there is a “window of opportunity” early in the disease course during which appropriate management improves outcomes. No data is available regarding patients’ pathway, before first pediatric rheumatology (PR) evaluation in India, a country where health-care costs are self- paid by patients and where a significant shortage of pediatric rheumatologists (PRsts) is known. This study aimed to describe time from onset of symptoms to first PR visit of JIA patients to a tertiary center in India and factors that impact this.

Methods

This retrospective study is from data collected at the PR center, Sir Ganga Ram Hospital (SGRH) in New Delhi. JIA patients fulfilling ILAR 2004 criteria and seen at least twice from 1st October 2013 to 30th September 2018 were included. Data collected were: demographic details, history of disease, referral practitioner, clinical and laboratory features, treatments. Mann-Whitney U-test, Chi square and logistic regression were used as appropriate to study factors that determined time to first PR visit.

Results

Five hundred and twenty patients were included: 396 were diagnosed at this PR center (group A), 124 were previously diagnosed as JIA and managed by non PRsts before first PR visit (group B). Median time from symptom onset to first PR visit was 4.1 months and median distance travelled 119.5 km. Despite ongoing treatment, group B patients had more aggressive disease and resided further away as compared to Group A patients.
On univariate analysis, factors that predicted PR visit within 3 months were private patients, short distance to travel, family history of inflammatory disease, history of fever, history of acute uveitis or high ESR. On multivariate analysis all these factors were significant except high ESR and acute uveitis.

Conclusion

Time to first PR assessment at this center was comparable to that seen in western countries. Cost of care and long distance to the center delayed consultation; acuity of complaints and family history of rheumatologic condition hastened referral.
Possible solutions to improve referral to PR centers would be to increase the number of PRsts and to improve medical insurance coverage.
Literature
1.
2.
Ravelli A. Toward an understanding of the long-term outcome of juvenile idiopathic arthritis. Clin Exp Rheumatol. 2004 Jun;22:271–5.PubMed
3.
Symmons DP, Jones M, Osborne J, Sills J, Southwood TR, Woo P. Pediatric rheumatology in the United Kingdom: data from the British pediatric rheumatology group National Diagnostic Register. J Rheumatol. 1996 Nov;23:1975–80.PubMed
4.
Ravelli A, Martini A. Early predictors of outcome in juvenile idiopathic arthritis. Clin Exp Rheumatol. 2003 Oct;21:S89–93.PubMed
5.
Sherry DD, Stein LD, Reed AM, Schanberg LE, Kredich DW. Prevention of leg length discrepancy in young children with pauciarticular juvenile rheumatoid arthritis by treatment with intraarticular steroids. Arthritis Rheum. 1999 Nov;42:2330–4.PubMedCrossRef
6.
7.
Petty RE. Prognosis in children with rheumatic diseases: justification for consideration of new therapies. Rheumatology (Oxford). 1999 Aug;38:739–42.CrossRef
8.
9.
Packham JC, Hall MA. Long-term follow-up of 246 adults with juvenile idiopathic arthritis: education and employment. Rheumatology (Oxford). 2002 Dec;41:1436–9.CrossRef
10.
Consolaro A, Giancane G, Alongi A, van Dijkhuizen EHP, Aggarwal A, Al-Mayouf SM, et al. Phenotypic variability and disparities in treatment and outcomes of childhood arthritis throughout the world: an observational cohort study. Lancet Child Adolesc Health. 2019;3:255–63.PubMedCrossRef
11.
Davies K, Cleary G, Foster H, Hutchinson E, Baildam E. British Society of Paediatric and Adolescent Rheumatology. BSPAR standards of care for children and young people with juvenile idiopathic arthritis. Rheumatology (Oxford). 2010;49:1406–8.CrossRef
12.
Foster H, Rapley T, May C. Juvenile idiopathic arthritis: improved outcome requires improved access to care. Rheumatology (Oxford). 2010;49:401–3.CrossRef
13.
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.PubMedCrossRef
14.
Castro M, Papadatou B, Baldassare M, Balli F, Barabino A, Barbera C, et al. Inflammatory bowel disease in children and adolescents in Italy: data from the pediatric national IBD register (1996-2003). Inflamm Bowel Dis. 2008;14:1246–52.PubMedCrossRef
15.
Bader-Meunier B, Armengaud JB, Haddad E, Salomon R, Deschênes G, Koné-Paut I, et al. Initial presentation of childhood-onset systemic lupus erythematosus: a French multicenter study. J Pediatr. 2005;146:648–53.PubMedCrossRef
16.
17.
Sawhney S. Do we need paediatric rheumatologists in India? Indian J Rheumatol. 2008;3:120–3.CrossRef
18.
Habibi S, Aggarwal A, Ramanan AV. Paediatric rheumatology in India: challenges and opportunities. Rheumatology (Oxford). 2012;51:962–3.CrossRef
19.
Scott C, Chan M, Slamang W, Okong’o L, Petty R, Laxer RM, et al. Juvenile arthritis management in less resourced countries (JAMLess): consensus recommendations from the cradle of humankind. Clin Rheumatol. 2019;38:563–75.PubMedCrossRef
20.
Raju P, Khubchandani. Spectrum of paediatric rheumatologic disease: The Mumbai experience. Indian J Rheumatol. 2012;7:7–10.
21.
Al Maini M, Adelowo F, Al Saleh J, Al Weshahi Y, Burmester G-R, Cutolo M, et al. The global challenges and opportunities in the practice of rheumatology: white paper by the world forum on rheumatic and musculoskeletal diseases. Clin Rheumatol. 2015;34:819–29.PubMedCrossRef
22.
Sawhney S, Manners P. The place of pediatric rheumatology in India. Indian J Pediatr. 2010;77:993–6.PubMedCrossRef
23.
Petty RE, Southwood TR, Manners P, Baum J, Glass DN, Goldenberg J, et al. International league of associations for rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001. J Rheumatol. 2004;31:390–2.PubMed
24.
Consolaro A, Ruperto N, Bazso A, Pistorio A, Magni-Manzoni S, Filocamo G, et al. Development and validation of a composite disease activity score for juvenile idiopathic arthritis. Arthritis Rheum. 2009;61:658–66.PubMedCrossRef
25.
Ravelli A, Consolaro A, Horneff G, Laxer RM, Lovell DJ, Wulffraat NM, et al. Treating juvenile idiopathic arthritis to target: recommendations of an international task force. Ann Rheum Dis. 2018;77:819–28.PubMed
26.
Pedhazur E. Multiple regression in behavioral research : explanation and prediction. 3rd ed. Wadsworth;1997.
27.
Aoust L, Rossi-Semerano L, Koné-Paut I, Dusser P. Time to diagnosis in juvenile idiopathic arthritis: a french perspective. Orphanet J Rare Dis. 2017;12:43.PubMedPubMedCentralCrossRef
28.
Freychet C, Lambert C, Pereira B, Stephan JL, Echaubard S, Merlin E, et al. Medical pathways of children with juvenile idiopathic arthritis before referral to pediatric rheumatology centers. Joint Bone Spine. 2019.
29.
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.PubMedCrossRef
30.
Shiff NJ, Tucker LB, Guzman J, Oen K, Yeung RSM, Duffy CM. Factors associated with a longer time to access pediatric rheumatologists in Canadian children with juvenile idiopathic arthritis. J Rheumatol. 2010;37:2415–21.PubMedCrossRef
31.
McErlane F, Foster HE, Carrasco R, Baildam EM, Chieng SEA, Davidson JE, et al. Trends in paediatric rheumatology referral times and disease activity indices over a ten-year period among children and young people with juvenile idiopathic arthritis: results from the childhood arthritis prospective study. Rheumatology (Oxford). 2016;55:1225–34.CrossRef
32.
Khawaja K, Al-Maini M. Access to pediatric rheumatology care for juvenile idiopathic arthritis in the United Arab Emirates. Pediatr Rheumatol Online J. 2017;15:41.PubMedPubMedCentralCrossRef
33.
Sørensen J, Hetland ML. All departments of rheumatology in Denmark. Diagnostic delay in patients with rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis: results from the Danish nationwide DANBIO registry. Ann Rheum Dis. 2015;74:e12.PubMedCrossRef
34.
Foster HE, Eltringham MS, Kay LJ, Friswell M, Abinun M, Myers A. Delay in access to appropriate care for children presenting with musculoskeletal symptoms and ultimately diagnosed with juvenile idiopathic arthritis. Arthritis Rheum. 2007;57:921–7.PubMedCrossRef
35.
36.
37.
Bhatia J, Cleland J. Health care of female outpatients in south-Central India: comparing public and private sector provision. Health Policy Plan. 2004;19:402–9.PubMedCrossRef
38.
Basu S, Andrews J, Kishore S, Panjabi R, Stuckler D. Comparative performance of private and public healthcare systems in low- and middle-income countries: a systematic review. PLoS Med. 2012;9.PubMedPubMedCentralCrossRef
39.
Dolezalova P, Anton J, Avcin T, Beresford MW, Brogan PA, Constantin T, et al. The European network for care of children with paediatric rheumatic diseases: care across borders. Rheumatology (Oxford). 2019;58:1188–95.CrossRef
40.
41.
Adib N, Hyrich K, Thornton J, Lunt M, Davidson J, Gardner-Medwin J, et al. Association between duration of symptoms and severity of disease at first presentation to paediatric rheumatology: results from the childhood arthritis prospective study. Rheumatology (Oxford). 2008;47:991–5.CrossRef
42.
Spencer CH. Why should pediatric rheumatology be recognized as a separate subspecialty: an open letter to medical councils and government agencies. Pediatr Rheumatol Online J. 2007;5:21.PubMedPubMedCentralCrossRef
43.
Myers A, McDonagh JE, Gupta K, Hull R, Barker D, Kay LJ, et al. More ‘cries from the joints’: assessment of the musculoskeletal system is poorly documented in routine paediatric clerking. Rheumatology (Oxford). 2004;43:1045–9.CrossRef
44.
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.PubMedCrossRef
45.
Len CA, Terreri MT, Puccini RF, Wechsler R, Silva EK, Oliveira LM, et al. Development of a tool for early referral of children and adolescents with signs and symptoms suggestive of chronic arthropathy to pediatric rheumatology centers. Arthritis Rheum. 2006;55:373–7.PubMedCrossRef
46.
Martini A, Ravelli A, Avcin T, Beresford MW, Burgos-Vargas R, Cuttica R, et al. Toward new classification criteria for juvenile idiopathic arthritis: first steps, pediatric rheumatology international trials organization international consensus. J Rheumatol. 2019;46:190–7.PubMedCrossRef
47.
Malaviya AN, Kotwal PP. Arthritis associated with tuberculosis. Best Pract Res Clin Rheumatol. 2003;17:319–43.PubMedCrossRef
48.
Arkachaisri T, Tang S-P, Daengsuwan T, Phongsamart G, Vilaiyuk S, Charuvanij S, et al. Paediatric rheumatology clinic population in Southeast Asia: are we different? Rheumatology (Oxford). 2017;56:390–8.
49.
Ruru G, Lanfang C, Xianming K, Xuesong L, Haiyan X, Lijuan S, et al. Fever as an initial manifestation of enthesitis-related arthritis subtype of juvenile idiopathic arthritis: retrospective study. PLoS One. 2015;10.
50.
Sawhney S. Juvenile idiopathic arthritis: classification, clinical features, and management. Indian J Rheumatol. 2012;7:11–21.CrossRef
51.
Kunjir V, Venugopalan A, Chopra A. Profile of Indian patients with juvenile onset chronic inflammatory joint disease using the ILAR classification criteria for JIA: a community-based cohort study. J Rheumatol. 2010;37:1756–62.PubMedCrossRef
52.
53.
54.
Aggarwal A, Agarwal V, Danda D, Misra R. Outcome in juvenile rheumatoid arthritis in India. Indian Pediatr. 2004;41:180–4.PubMed
55.
Sarma PK, Misra R, Aggarwal A. Physical disability, articular, and extra-articular damage in patients with juvenile idiopathic arthritis. Clin Rheumatol. 2008;27:1261–5.PubMedCrossRef
56.
Verstappen SMM, Cobb J, Foster HE, Fu B, Baildam E, Wedderburn LR, et al. The association between low socioeconomic status with high physical limitations and low illness self-perception in patients with juvenile idiopathic arthritis: results from the childhood arthritis prospective study. Arthritis Care Res (Hoboken). 2015;67:382–9.CrossRef
Metadata
Title
Factors impacting referral of JIA patients to a tertiary level pediatric rheumatology center in North India: a retrospective cohort study
Authors
Manjari Agarwal
Caroline Freychet
Sumidha Jain
Abhay Shivpuri
Anju Singh
Veronique Dinand
Sujata Sawhney
Publication date
01-12-2020
Publisher
BioMed Central
Published in
Pediatric Rheumatology / Issue 1/2020
Electronic ISSN: 1546-0096
DOI
https://doi.org/10.1186/s12969-020-0408-4

Other articles of this Issue 1/2020

Pediatric Rheumatology 1/2020 Go to the issue

Research article

Patients with enthesitis related arthritis show similar monocyte function pattern as seen in adult axial spondyloarthropathy

Research article

The spectrum of pediatric amplified musculoskeletal pain syndrome

Research article

Patient factors associated with waiting time to pediatric rheumatologist consultation for patients with juvenile idiopathic arthritis

Research article

Use of PROMIS® to screen for depression in children with arthritis

Case Report

Adolescent Sjogren’s syndrome presenting as psychosis: a case series

Research article

High prevalence of rare FBLIM1 gene variants in an Italian cohort of patients with Chronic Non-bacterial Osteomyelitis (CNO)