Otro
Preliminary core sets of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositis
Registro en:
Rheumatology, v. 42, n. 12, p. 1452-1459, 2003.
1462-0324
10.1093/rheumatology/keg403
2-s2.0-3142718093
Autor
Ruperto, Nicolino
Ravelli, Angelo
Murray, Kevin J.
Lovell, Daniel J.
Andersson-Gare, Boel
Feldman, Brian M.
Garay, Stella
Kuis, Wietse
Machado, Claudio
Pachman, Lauren
Prieur, Anne-Marie
Rider, Lisa G.
Silverman, Earl
Tsitsami, Elena
Woo, Pat
Giannini, Edward H.
Martini, Alberto
Bae, Sang Cheol
Balogh, Zsolt
Burgos-Vargas, Ruben
De Cunto, Carmen
De Inocencio, Jaime
Dolezalova, Pavla
Harjacek, Miroslav
Hashkes, Philip
Hofer, Michael
Honkanen, Visa
Huemer, Christian
Huppertz, Hans-Iko
Joos, Rik
Kanakoudi, Florence
Lilleby, Vibke
Melo-Gomes, Jose
Mihaylova, Dimitrina
Nielsen, Susan
Nikishina, Irina
Ozdogan, Huri
Pagava, Kharaman
Reed, Anne M.
Rennebohm, Robert
Romicka, Anna Maria
Rooney, Madeleine
Rumba, Ingrida
Susic, Gordana
Vesely, Richard
Resumen
Objective. To identify preliminary core sets of outcome variables for disease activity and damage assessment in juvenile systemic lupus erythematosus (JSLE) and juvenile dermatomyositis (JDM). Methods. Two questionnaire surveys were mailed to 267 physicians from 46 different countries asking each member to select and rank the response variables used when assessing clinical response in patients with JSLE or JDM. Next, 40 paediatric rheumatologists from 34 countries met and, using the nominal group technique, selected the domains to be included in the disease activity and damage core sets for JSLE and JDM. Results. A total of 41 response variables for JSLE and 37 response variables for JDM were selected and ranked through the questionnaire surveys. In the consensus conference, domains selected for both JSLE and JDM activity or damage core sets included the physician and parent/patient subjective assessments and a global score tool. Domains specific for JSLE activity were the immunological tests and the kidney function parameters. Concerning JDM, functional ability and muscle strength assessments were indicated for both activity and damage core sets, whereas serum muscle enzymes were included only in the activity core set. A specific paediatric domain called 'growth and development' was introduced in the disease damage core set for both diseases and the evaluation of health-related quality of life was advised in order to capture the influence of the disease on the patient lifestyle. Conclusions. We developed preliminary core sets of measures for disease activity and damage assessment in JSLE and JDM. The prospective validation of the core sets is in progress.
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Preliminary core sets of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositis
Pediatric II; Princess Margaret Hosp. for Children; Cincinnati Childrens Hosp. Med. Ctr.; Ryhov's County Hospital; Rheumatology Department; Unidad de Reumatologia; Dept. Pediatr. Immunol./Rheumatol.; Universidade Estadual Paulista (Unesp); Dept. of Immunology/Rheumatology; Hematol. et Rhumatologie Pediatrique; National Institute of Health; Aristotle University (2003-12-01)Objective. To identify preliminary core sets of outcome variables for disease activity and damage assessment in juvenile systemic lupus erythematosus (JSLE) and juvenile dermatomyositis (JDM). Methods. Two questionnaire ... -
Preliminary core sets of measures for disease activity and damage assessment in juvenile systemic lupus erythematosus and juvenile dermatomyositis
Pediatric II; Princess Margaret Hosp. for Children; Cincinnati Childrens Hosp. Med. Ctr.; Ryhov's County Hospital; Rheumatology Department; Unidad de Reumatologia; Dept. Pediatr. Immunol./Rheumatol.; Universidade Estadual Paulista (Unesp); Dept. of Immunology/Rheumatology; Hematol. et Rhumatologie Pediatrique; National Institute of Health; Aristotle University (2003-12-01)Objective. To identify preliminary core sets of outcome variables for disease activity and damage assessment in juvenile systemic lupus erythematosus (JSLE) and juvenile dermatomyositis (JDM). Methods. Two questionnaire ... -
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