410 TheJournalofRheumatology2009;36:2;doi:10.3899/jrheum.080514 Personal non-commercial use only. The Journal of Rheumatology Copyright © 2009. All rights reserved. Access to Pediatric Rheumatology Subspecialty Care in British Columbia, Canada NATALIEJ.SHIFF,REEMABDWANI,DAVIDA.CABRAL,KRISTINM.HOUGHTON,PETERN.MALLESON, ROSSE.PETTY,VICTORM.ESPINOSA,andLORIB.TUCKER ABSTRACT. Objective. Early recognition and treatment of pediatric rheumatic diseases is associated with improvedoutcome.Wedocumentedaccesstopediatricrheumatologysubspecialtycareforchildren in British Columbia (BC), Canada, referred to the pediatric rheumatology clinic at BC Children’s Hospital,Vancouver. Methods. AnauditofnewpatientsattendingtheoutpatientclinicfromMay2006toFebruary2007 was conducted. Parents completed a questionnaire through a guided interview at the initial clinic assessment.Referraldateswereobtainedfromthereferralletters.Patientswereclassifiedashaving rheumaticdisease,nonrheumaticdisease,orapainsyndromebasedonfinaldiagnosisbyapediatric rheumatologist. Results. Data were collected from 124 of 203 eligible new patients. Before pediatric rheumatology assessment,amedianof3healthcareproviderswereseen(range1–11)foramedianof5visits(range 1–39). Overall, the median time interval from symptom onset to pediatric rheumatology assessment was268days(range13–4989),andthemediantimeintervalfromsymptomonsettoreferraltopedi- atric rheumatology was 179 days (range 3–4970). Among patients ultimately diagnosed with rheu- maticdiseases(n=53),therewasamedianof119days(range3–4970)fromsymptomonsettorefer- ral, and 169 days (range 31–4989) from onset to pediatric rheumatology assessment. Conclusion. Children and adolescents with rheumatic complaints see multiple care providers for multiple visits before referral to pediatric rheumatology, and there is often a long interval between symptom onset and this referral. (First Release Dec 15 2008; J Rheumatol 2009;36:410–5; doi:10.3899/jrheum.080514) KeyIndexingTerms: JUVENILEIDIOPATHICARTHRITIS HEALTHSERVICESNEEDSANDDEMAND PEDIATRICRHEUMATICDISEASES FromtheDivisionofPediatricRheumatology,DepartmentofPediatrics, UniversityofBritishColumbia(UBC),Vancouver,BC,Canada. N.J.Shiff,MD,PediatricRheumatologySubspecialtyResident,Divisionof Rheumatology,DepartmentofPediatrics,UBC;R.Abdwani,MD, PediatricRheumatologyConsultant,ChildHealthDepartment,Sultan QaboosUniversityHospital,Oman;D.A.Cabral,MBBS,Clinical AssociateProfessorofPediatrics,Head,DivisionofRheumatology, DepartmentofPediatrics,UBC;K.M.Houghton,MD,MSc,Clinical AssistantProfessorofPediatrics,DivisionofRheumatology,Department ofPediatrics,UBC;P.N.Malleson,MBBS,ProfessorofPediatrics, DivisionofRheumatology,DepartmentofPediatrics,UBC;R.E.Petty, MD,PhD,ProfessorEmeritusofPediatrics,DivisionofRheumatology, DepartmentofPediatrics,UBC;V.M.Espinosa,MSc,ITResearch Support,Manager,CentreforAppliedHealthResearchandEvaluation, ChildandFamilyResearchInstitute,UBC;L.B.Tucker,MD,Clinical AssociateProfessorofPediatrics,DivisionofRheumatology,Department ofPediatrics,UBC. AddressreprintrequeststoDr.N.J.Shiff,DivisionofRheumatology, BCChildren’sHospital,RoomK4-120,4480OakStreet,Vancouver,BC V6H3V4.E-mail:nshiff@cw.bc.ca AcceptedforpublicationSeptember26,2008. For children ultimately diagnosed with rheumatic disease, theremaybeseveralintermediaryreferralsorlogisticdelays after contact with their initial primary healthcare provider and before being seen by a pediatric rheumatologist for assessment, diagnosis, and treatment. Yet early detection and intervention are thought to optimize outcome for most rheumaticconditions,rangingfrompotentiallyfatalvasculi- tides to morbidities such as uveitis associated with juvenile idiopathic arthritis (JIA) 1,2 . Canadian standards for access to pediatric rheumatology care do not exist. The Canadian Rheumatology Association consensus statement on treatment of early rheumatoid arthritis(RA)advocatesearlyreferraltoanarthritisspecial- ist 3 . The Alliance for the Canadian Arthritis Program (an alliance of arthritis patients, volunteer associations, care- givers, healthcare providers, researchers, government, and industry)recentlyrecommendedtheidentificationandtreat- mentofanyinflammatoryarthritiswithin4weeksofseeing a healthcare professional, and provisionally recommended timely access to integrated age- and stage-appropriate healthcare 4 . This guideline did not explicitly address the issue of rheumatic disease in children. The American College of Rheumatology has developed guidelines for referraltopediatricrheumatologists,buttheseguidelinesdo not address referral times 1 . Time intervals from symptom onset to initial pediatric rheumatology assessment in Canada are beginning to be described 5 ;however,therouteandtimedelaypriortopedi- www.jrheum.org Downloaded on October 10, 2021 from