title: Current Research in Outcome Measures for Pediatric Rheumatic and Autoinflammatory Diseases.
abstract: A rational management of children and adolescents with rheumatic and autoinflammatory diseases requires the regular assessment of the level of disease activity and of child health and well-being through the use of well-validated outcome measures. Ideally, such instruments should be simple and feasible and easily applicable in standard clinical practice. In recent years, a number of novel outcome measures have been developed and validated for use in pediatric patients with rheumatic and autoinflammatory illnesses. Furthermore, there has been an increased focus on the appraisal of child and parent perception of the disease impact. The new tools have markedly enlarged the spectrum of disorders and health domains that can be assessed in a standardized way. This progress will help to enhance the reliability of research studies and clinical trials. The aim of the present review is to provide an update of the recent advances in this field of research.
authors.affiliation: Gulhane Military Medical Faculty, Pediatric Rheumatology Unit, FMF Arthritis Vasculitis and Orphan Disease Research in Pediatric Rheumatology (FAVOR), 06018, Etlik, Ankara, Turkey. erkandemirkaya@yahoo.com.
authors.forename: Erkan
authors.initials: E
authors.lastname: Demirkaya
authors.affiliation: Università degli Studi di Genova and Istituto Giannina Gaslini, via G. Gaslini 5, 16147, Genoa, Italy.
authors.forename: Alessandro
authors.initials: A
authors.lastname: Consolaro
authors.affiliation: Department of Pediatrics, Division of Rheumatology, Hacettepe University Faculty of Medicine, 06100, Sıhhiye, Ankara, Turkey.
authors.forename: Hafize Emine
authors.initials: HE
authors.lastname: Sonmez
authors.affiliation: Università degli Studi di Genova and Istituto Giannina Gaslini, via G. Gaslini 5, 16147, Genoa, Italy.
authors.forename: Gabriella
authors.initials: G
authors.lastname: Giancane
authors.affiliation: Gulhane Military Medical Faculty, School of Medicine, Division of Pediatric Rheumatology, 06018, Etlik, Ankara, Turkey.
authors.forename: Dogan
authors.initials: D
authors.lastname: Simsek
authors.affiliation: Università degli Studi di Genova and Istituto Giannina Gaslini, via G. Gaslini 5, 16147, Genoa, Italy.
authors.forename: Angelo
authors.initials: A
authors.lastname: Ravelli
mesh_terms: D035843:Biomedical Research / Q000379:methods; D002648:Child; D056660:Hereditary Autoinflammatory Diseases / Q000534:rehabilitation*; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000534:rehabilitation; D017063:Outcome Assessment, Health Care / Q000379:methods; D011788:Quality of Life; D012216:Rheumatic Diseases / Q000534:rehabilitation*; D012720:Severity of Illness Index
keywords: Autoinflammatory diseases; Disease activity; Disease damage; Health-related quality of life; Outcome measures; Pediatric rheumatic diseases