Juvenile Idiopathic Arthritis in two Tertiary Centres in the Western Cape, South Africa

73 Pages·2011·2.21 MB·English

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The copyright of this thesis vests in othe author. No
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quotation from it or information derived from it is to be

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published without full acknowledgement of the source.
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The thesis is to be used fora private study or non-
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commercial research purposes only.

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Published by the Universyity of Cape Town (UCT) in terms
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of the non-exclusive liciense granted to UCT by the author.
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Juvenile Idiopathic Arthritis in
two Tertiary Centres in the
Western Cape, South nAfrica
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Kate Weakley
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Submitted to the University of Cape Town in partial requirement
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for thes degree of MMed(paediatrics)
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Faculty of Health Science
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University of Cape Town
Supervisor: Dr. Chris Scott
Communication: [email protected]
[email protected]
Table of Contents
Declaration ............................................................................................................................ iii
1. Protocol .......................................................................................................................... 1
(Submitted to School of Child and Adolescent Health UCT before commencement of the
study) ..................................................................................................................................... 1
1.1. Introduction ............................................................................................................ 1
1.2. Objectives ............................................................................................................... 2
1.3. Methods .................................................................................................................. 2
1.3.4 Investigators ........................................................................................................... 4
Investigators would include doctors and nurses in the rheumatology clinic at Groote
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SchuurHospital..................................................................................................................4
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1.4 References .............................................................................................................. 6
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2 Protocol Amendment 1 .................................................................................................. 8
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3 Literature Review ........................................................................................................... 9

3.1 Objectives ofliterature review........................e.......................................................9
3.2 LiteratureSearchStrategy..........................p............................................................9
3.3 Literature...............................................a...............................................................11
3.4 Studies describingJIA........................C...................................................................12
3.6 Conclusion................................... ..........................................................................22
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3.7References..................................................................................................................24
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4 Journal article............................ ...................................................................................27
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4.1 Abstract.................................................................................................................27
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4.2 Introduction..............i............................................................................................28
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4.3 Methods................................................................................................................31
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4.4 Procedures.......e.....................................................................................................31
4.5 Analysis.......v..........................................................................................................34
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4.6 Ethics.....n................................................................................................................34
4.7 ResultUs...................................................................................................................35
4.8 Conclusion.............................................................................................................47
4.9 References ............................................................................................................ 48
5 Appendices ................................................................................................................... 52
5.1 ILAR Classification ................................................................................................. 52
5.2 CHAQ English ........................................................................................................ 55
5.3 CHAQ Xhosa .......................................................................................................... 57
5.4 CHAQ Zulu ............................................................................................................. 59
5.5 CHAQ Afrikaans ..................................................................................................... 61
5.6 Data collection sheet ............................................................................................ 63
5.8 Consent Form: Participation in study on arthritis in the Western Cape. ............. 65
5.9 Ethics Approval, University of Cape Town ............................................................ 66
5.10 Ethics Approval, University of Stellenbosch ......................................................... 68
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Declaration
I, ………………………………, hereby declare that the work on which this dissertation/thesis is
based is my original work (except where acknowledgements indicate otherwise) and that
neither the whole work nor any part of it has been, is being, or is to be submitted for
another degree in this or any other university. n
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I empower the university to reproduce for the purpose of research either the whole or
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any portion of the contents in any manner whatsoevere.
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Juvenile Idiopathic Arthritis in two Tertiary Centres in the Western Cape, South Africa
1. Protocol
(Submitted to School of Child and Adolescent Health UCT before commencement of
the study)
1.1. Introduction
Juvenileidiopathicarthritis(JIA)is definedas arthritis ofunknownaetiology thatbegins
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beforethe16thbirthday andpersists for atleast6weeks, other cownditionsbeing
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excluded. Ithas become a well definedandclassifieddiseasTewiththerevised

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International LeagueofAssociationsforRheumatology(ILAR)classificationinEdmonton
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in2001. 1 a
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As JIA is adisease withserious functionoal implications,a descriptive studywouldnotbe

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complete withoutreviewing boththe functional andclinical parameters ofthe disease.
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Juvenileidiopathicarthriteis hasbeenpoorly researchedthe SouthAfricancontext.A
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descriptive studywias done in1984aboutJIA specifically in SouthAfricanchildrenof
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blackandindiandescent2. It was aretrospective study of60patients from the R KKhan
Hospital complex inDurban, SouthAfrica, using the oldWHO/EULARclassification. There
have beennumerous descriptive studies done incountries throughouttheworld,
including westernisedcountries suchas the USA3andBritain4as well as studies in
developing countries suchas Turkey5, Morocco6andIndia7.These will allbe vitalfor
comparingdata toourstudy population.
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Juvenile Idiopathic Arthritis in two Tertiary Centres in the Western Cape, South Africa
From a functional perspective, a recentstudy in2009 lookedatdescribing JIA in
Moroccanpatients6. The study describedhealthrelatedquality oflife (HRQOL), functional
disability, using thechildhealthassessmentquestionnaire(CHAQ)as well as typesofJIA,
clinical determinants andlaboratory parameters.A recentmultinational studyby the
Paediatric RheumatologyInternationalTrialsOrganisation(PRINTO)comparedHRQOL
andfunctional disability (using CHAQ)from 3 geographicareas, including 16Western
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EuropeanCountries,10Eastern Europeancountries and4LatinAmericancountries8.
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From, theabove,itis clear thattherehas beenalotofreceTntworkintodescribing JIAin

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bothdevelopedanddeveloping countries interms ofclinical disease, HRQOL and
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functional disability.Therehasbeenvery little Africandata, however,onthis subject.
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1.2. Objectives o

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Todescribe the functional disaibility andclinical diseasecharacteristics ina sampleof
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childrendiagnosedwithJeIA inCape Town, SouthAfrica.
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1.3. Methods
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1.3.1. Study Design
This is a prospective cross sectional study.
1.3.2. Subjects
Subjects will be from Groote Schuur Hospital Rheumatology clinic (Please see amendment
1). These are newly referred as well as previously diagnosed and followed up patients
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Juvenile Idiopathic Arthritis in two Tertiary Centres in the Western Cape, South Africa
from the Cape Town area. This clinic serves the population of the Western Cape region of
South Africa and also acts as a tertiary referral area to other large regions of South Africa
such as the Northern and Eastern Cape. It is thus a large area of South Africa representing
a culturally diverse population.
Patients will be randomly sampled from the clinic attendees.Patients should be younger
than 16 when diagnosed with Juvenile idiopathic arthritis as well as classified by a
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paediatric rheumatologist into an ILAR 2001 subtype.(Appendix 1)
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1.3.3. Measurement

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Functional disability isassessedusing theCHAQ9a; 10whichhas beenusedinboththe
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Moroccan6study aswell as the PRINTO8seriesandis thus a wellvalidatedquestionnaire

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inbothdeveloping anddevelopedw orlds.It wouldbe useful incomparingdata from
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thesestudies. i
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The CHAQ hasbeentrvanslatedintoAfrikaans,English, ZuluandXhosa, some ofthe 4 main
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languagesofthe area. The motherorchild(whencapable) wouldbe askedtofilloutthe
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CHAQ withthehelpofthe doctor or nurseattending tothematthe clinic. The CHAQ
measures the child’s ability toperform functionsin8areas (dressing andgrooming,
arising, eating,walking, hygiene,reach,gripandactivity)fora total number of30.Each
question is scoredfrom 0 to3(0= nodifficulty,1= somedifficulty, 2 =muchdifficulty, 3=
unable todoso). Thequestion withthe highestscoredeterminesthescore for that
functional area.If aids ordevices are usedorhelpis neededtocomplete tasks ina certain
area, a minimumscoreof2is recordedfor thecorresponding functionalarea.Thescores
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Juvenile Idiopathic Arthritis in two Tertiary Centres in the Western Cape, South Africa
for each of the eight functional areas are averaged to calculate the CHAQ disability index
(DI), which ranges from 0 to 3 (0 = best; 3 = worst). The parent's version of the CHAQ
incorporates also a doubly-anchored horizontal 10 cm visual analogue scale (VAS) for the
assessment of the child's overall well-being(parent general evaluation-PGE-with anchors
of ‘0 = very well’ and ‘10 = very poor’) and a doubly-anchored horizontal 10 cm VAS for
the assessment of the intensity of the child's pain (with anchors of ‘0 = no pain’ and ‘10 =
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very severe pain’). 5
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Ona separate excel spreadsheet(appendix5) foreachpatiTentthereis a recordofstudy

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number, age (0-16), sex (M/F), primary caregiver(mother/father/grandparent/auntetc),
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age atdiagnosis, areaofresidence(suburb/township)andlevel ofschooling (Grade 1-12).
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Importantly,therewouldalsobea recorfdofwhether thechildhadever hadTBor HIV.
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Therewouldbe a diagram whereoynecouldrecordinvolvedjoints including active
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(swollenor limitedandtender) andlimitedjoints(joints withalimitedrange of
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motion).(Appendix6).v Therewouldalsobe a place for the recording oflaboratoryresults
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(ifavailable), namely antinuclear antibodies(ANA), rheumatoidfactor(RF), human
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leukocyteantigenB27(HLA B27), haemoglobin(Hb), platelets (Plts)erythrocyte
sedimentation rate (ESR), C-reactiveprotein(CRP), the livertransaminases-ALTandAST,
andcreatinine.
1.3.4 Investigators
Investigators would include doctors and nurses in the rheumatology clinic at Groote
Schuur Hospital.
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Juvenile Idiopathic Arthritis in two Tertiary Centres in the Western Cape, South Africa
1.3.5 Ethics
Each patient will be allocated a study number and therefore will have their confidentiality
protected. No additional tests or interventions will be performed on patients for the
purpose of the study. Informed consent will be obtained by parents, or where capable,
patients.
1.3.6 Reporting and implementation n
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The finalised documentation and data will be presented to School of Child and Adolescent
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Health Research Committee for evaluation and submisesion to publication, if accepted.
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Juvenile Idiopathic Arthritis in two Tertiary Centres in the Western Cape, South Africa
1.4 References
1. Petty RE, Southwood TR, Manners P, et al. International League of Associations
for Rheumatology classification of juvenile idiopathic arthritis: second revision,
Edmonton, 2001.J Rheumatol 2004;31:390-392.
2. Haffejee IE, Raga J, Coovadia HM. Juvenile chronic arthritis in black and indian
South African children. S.Afr. Med. J. 1984; 65:510-14.
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3. Bowyer S, Roettcher P andmembers ofthePediatric Rheumatology DataBase
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ResearchGroup. PediatricRheumatology clinicpopuTlationsinthe US:Results ofa

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3 year survey.J Rheumatol. 1996;23:1968-74.
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4. Symmonds DP,Jones M, OsborneJ etal.PediatricRheumatologyinthe United
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Kingdom: Data fromthe BritishPfediatric Rheumatology GroupNational Diagnostic
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Register. J. Rheumatol. 199y6;23:1975-80.
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5. YilmazM, Kendirli SG,Altintas DU etal. Juvenile Idiopathicarthritis profile in
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Turkishchildrevn. Pediatrics Int2008;50:154-158
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6. Amine B, RotomS, Benbouazza Ketal. Healthrelatedquality oflifesurvey about
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childrenandadolescentswithjuvenile idiopathicarthritis. Rheumatol Int.
2009;29:275-279
7. Aggarwal A, Misra R. Juvenile Chronic Arthritis in India: Is it different from that
seen in Western countries? Rheumatol. Int. 1994;14:53-56.
8. Gutierrez-Suarez R, Pistorio A, Cespedez Cruz A. (2007) Health related quality of
life of patient with Juvenile idiopathic arthritis coming from 3 different geographic
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