Cross-cultural adaptation and psychometric evaluation of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) in 38 countries. Review of the general methodology Francesca Bovis 1* , Alessandro Consolaro 1,2* , Angela Pistorio 3 , Marco Garrone 1 , Silvia Scala 1 , Elisa Patrone 1 , Alberto Martini 1 , Angelo Ravelli 1,2 , Nicolino Ruperto 1 , for the Paediatric Rheumatology International Trials Organisation (PRINTO) * those authors contributed equally 1 Istituto Giannina Gaslini, Pediatria II - Reumatologia, PRINTO, Genoa, Italy 2 Università di Genova, Dipartimento di Pediatria, Genoa, Italy 3 Istituto Giannina Gaslini, Servizio di Epidemiologia, Biostatistica e Comitati, Genoa, Italy Please address correspondence and reprint requests to: Nicolino Ruperto, MD, MPH Paediatric Rheumatology International Trials Organisation (PRINTO) Istituto G Gaslini, Pediatria II-Reumatologia Via Gaslini, 5 16147 Genoa, ITALY. E-mail: [email protected]www.printo.it 1
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Cross-cultural adaptation and psychometric evaluation of the Juvenile Arthritis
Multidimensional Assessment Report (JAMAR) in 38 countries. Review of the general
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Fig. 1. Diagram summarising the steps followed for the cross-cultural adaptation and validation
procedures.
PHASE I: CROSS-CULTURAL ADAPTATION
1 to 3 forward translations
First unified forward version
1 to 3 backward translations
Second unified forward version
Probe technique in the target population
Third unified forward version
PHASE II: VALIDATION
Large scale data collection in healthy and JIA children
Psychometric issues and statistical analysis
Final unified forward version
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Table 1. Number of patients with JIA (frequency in parenthesis) and number of healthy children.
Countries Systemic Oligoarthritis RF- Poly-arthritis
Table 2: List of PRINTO National Coordinators who oversaw the cross-cultural adaptation phase and the data collection for the validation phase in their respective countries.
First Name Last Name Hospital Town CountryStella Maris Garay Hospital Sor Maria Ludovica La Plata ArgentinaClaudia Saad Magalhaes Hospital das Clínicas - Botucatu Medicine University, UNESP Botucatu BrazilDimitrina Mihaylova University Children Hospital Sofia BulgariaMiroslav Harjacek Clinical Hospital Center Sestre Milosrdnice Zagreb CroatiaPavla Dolezalova Charles University in Prague and General University Hospital Praha Czech RepublicSusan Nielsen Rigshospitalet Copenhagen DenmarkYasser El Miedany Ain Shams University Cairo EgyptChris Pruunsild Tartu University Hospital, Children' s Clinic Tartu EstoniaPierre Quartier Paris-Descartes University, IMAGINE Institute, Necker
Children’s Hospital.Paris France
Maka Ioseliani M. Iashvili Children's Central Clinic Tbilisi GeorgiaDirk Foell University Hospital Muenster Muenster GermanyMaria Trachana Hippokration General Hospital, Thessaloniki University
School of MedicineThessaloniki Greece
Ilonka Orban National Institute of Rheumatology and Physiotherapy Budapest HungaryAmita Aggarwal Sanjay Gandhi Postgraduate Institute of Medical Sciences Lucknow IndiaNahid Shafaie Shariati Hospital Teheran IranYosef Uziel Meir Medical Centre Kfar Saba IsraelNicolino Ruperto Istituto Giannina Gaslini Genova ItalyIngrida Rumba-Rozenfelde University of Latvia Riga LatviaSoad Hashad Tripoli Children's Hospital Tripoli LibyaVioleta Panaviene Vilnius University Vilnius LithuaniaRuben Burgos-Vargas Hospital General de Mexico Mexico City MexicoNico Wulffraat Wilhelmina Kinderziekenhuis Utrecht NetherlandsBerit Flato Oslo University Hospital Oslo NorwaySafiya Al-Abrawi Royal Hospital Muscat OmanZoilo Morel Ayala Centro Materno Infantil. Hospital De Clinicas. Universidad
Nacional De Asuncion.San Lorenzo Paraguay
Lidia Rutkowska-Sak Institute of Rheumatology Warsaw Poland
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First Name Last Name Hospital Town CountryCalin Lazar Children Emergencies Hospital Cluj-Napoca RomaniaSulaiman M. Al-Mayouf King Faisal Specialist Hospital and Research Center Riyadh Saudi ArabiaGordana Susic Institute of Rheumatology, Belgrade Belgrade SerbiaVeronika Vargova Faculty of Medicine, Pavol Jozef Šafárik University in Košice Kosice SlovakiaTadej Avcin University Children's Hospital, Ljubljana Ljubljana SloveniaChristiaan Scott Red Cross Children Hospital and Groote Schuur Hospital Cape town South AfricaJaime De Inocencio 12 de Octubre University Hospital Madrid SpainBoel Andersson Gare Ryhov County Hospital Jonkoping SwedenSoamarat Vilaiyuk Ramathibodi Hospital Bangkok ThailandYaryna Boyko Western Ukrainian Specialized Children's Hospital Lviv UkraineJoyce Davidson The Royal Hospital for Children Glasgow United KingdomDan Lovell Cincinnati Children's Hospital Medical Center Cincinnati, OH United States
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Table 3. List of the additional PRINTO Directors who oversaw the data collection for the validation phase at their respective centres.
First Name Last Name Hospital Town CountryRuben Cuttica Hospital Pedro de Elizalde Buenos Aires ArgentinaCarmen De Cunto Buenos Aires Italy Hospital Buenos Aires ArgentinaGraciela Espada Hospital de Ninos Ricardo Gutierrez Buenos Aires ArgentinaMaria Martha Katsicas Hospital de Pediatria Juan P. Garrahan Buenos Aires ArgentinaSheila K. Oliveira Universidade Federal do Rio de Janeiro Rio de Janeiro BrazilFlavio Sztajnbok University Hospital Pedro Ernesto Rio de Janeiro BrazilBoriana Varbanova Varna Medical University Varna BulgariaTroels Herlin Skejby Sygehus, Aarhus University Hospital Aarhus DenmarkAnne Estmann Odense University Hospital Odense DenmarkKaraman Pagava Tbilisi State Medical University Pediatric Clinic Tbilisi GeorgiaNikolay Tzaribachev RHEKITZ - Rheumatologische Kinderpraxen Tzaribachev Bad Bramstedt GermanyKirsten Minden Charite University Hospital Berlin Berlin GermanyHans-Iko Huppertz Clinic Bremen-Mitte, Prof.-Hesse Children’s Hospital Bremen GermanyJohannes-Peter Haas German Center for Pediatric and Adolescent Rheumatology Garmisch-Partenkirchen GermanyIvan Foeldvari Hamburg Centre for Pediatric and Adolescent
RheumatologyHamburg Germany
Gerd Horneff Asklepios Children’s Hospital Sankt Augustin Sankt Augustin GermanyGerd Ganser St. Josef-Stift Sendenhorst Sendenhorst GermanyElena Tsitsami University of Athens Medical School, Children Hospital
Aghia SophiaAthens Greece
Olga Vougiouka "P a A Kyriakou" Children's Hospital Athens GreeceTamas Constantin Semmelweis University Budapest HungaryRaju Khubchandani Jaslok Hospital and Research Centre Mumbai IndiaSujata Sawhney Sir Ganga Ram Hospital Marg New Delhi IndiaYahya Aghighi Vali-e-Asr Children’s Hospital Teheran IranMohammad Hasan Moradinejad Children's Hospital, Medical Center Teheran IranLiora Harel Schneider Childrens Medical Center Petach-Tikvah IsraelAngela Miniaci Azienda Ospedaliero-Universitaria S.Orsola-Malpighi Bologna ItalyFrancesco La Torre Ospedale Antonio Perrino Brindisi Italy
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First Name Last Name Hospital Town CountryRosa Anna Podda Ospedale Regionale Microcitemia - II Clinica Pediatrica Cagliari ItalyPatrizia Barone Catania University Hospital Catania ItalyRolando Cimaz University Hospital Meyer Firenze ItalyRomina Gallizzi Università di Messina Messina ItalyFabrizia Corona Fondazione IRCCS Ca' Granda-Ospedale Maggiore
PoliclinicoMilano Italy
Valeria Gerloni Istituto Gaetano Pini Milano ItalyElisabetta Cortis Santa Maria della Stella Hospital Orvieto (Terni) ItalyMaria Cristina Maggio Children Hospital Palermo ItalyRita Consolini Santa Chiara Hospital, University of Pisa Pisa ItalyDonato Rigante Cattolica Sacro Cuore University Roma ItalyFabrizio De Benedetti Bambino Gesù Children's Hospital Roma ItalySilvana Martino Paediatrics, University of Torino Torino ItalyAdele Civino Cardinale G. Panico Hospital Tricase (Lecce) ItalySerena Pastore IRCCS Burlo Garofolo Trieste ItalySara Pieropan Policlinico G.B.Rossi Verona ItalySylvia Kamphuis ErasmusMC Sophia Childrens Hospital Rotterdam NetherlandsEllen Berit Nordal University Hospital of Northern Norway Tromso NorwayMarite Rygg St. Olavs University Hospital of Trondheim Trondheim NorwayReem Abdwani Sultan Qaboos University Hospital Muscat OmanElzbieta Smolewska Medical University of Łódź Lodz PolandNicolae Iagaru Institute for Mother and Child Care Bucharest RomaniaAdriana Apostol County Emergency Hospital Constanta RomaniaConstantin Ailioaie Children Emergencies Hospital Iasi RomaniaAndrea Militaru Emergency Hospital for Children Timisoara RomaniaMatilda Laday County Emergency Hospital Tirgu-Mures RomaniaJelena Vojinovic Clinical Center, Faculty of Medine, Universaity of Nis Nis SerbiaGordana Vijatov-
DjuricInstitute for Child and Youth Health Care of Vojvodina Novi Sad Serbia
Tomas Dallos University Children's Hospital Bratislava (DFNsP v Bratislave)
Bratislava Slovakia
Jordi Anton Hospital Sant Joan de Déu, University of Barcelona Barcelona Spain
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First Name Last Name Hospital Town CountryRosa Merino Hospital Universitario La Paz Madrid SpainPablo Mesa-del-
CastilloHospital Clínico Universitario Virgen de la Arrixaca Murcia Spain
Inmaculada Calvo Penades
University Hospital La Fe Valencia Spain
Lillemor Berntson Uppsala University Hospital Uppsala SwedenPamela Weiss Children's Hospital of Philadelphia Philadelphia, PA United
StatesSarah Ringold Seattle Children's Hospital Seattle, WA United