title: Information technology in paediatric rheumatology.
abstract: Information technology in paediatric rheumatology has seen several exciting developments in recent years. The new multidimensional questionnaires for juvenile idiopathic arthritis, juvenile dermatomyositis, and juvenile autoinflammatory diseases integrate all major parent- and child-reported outcomes (PCROs) used in these diseases into a single tool, and provide an effective guide to manage, document change in health, assess effectiveness of therapeutic interventions, and verify the parent and child satisfaction with illness outcome. The Pharmachild registry is aimed to gain information concerning the long-term effectiveness and safety of the medications currently used in juvenile idiopathic arthritis, particularly biologic agents, through collection of prospective data in a large, multinational sample of patients. Children and their parents are directly involved in the data collection by means of the regular completion of a digital version of a multidimensional questionnaire. The Patient-Reported Outcomes Measurement Information System (PROMIS) employs modern measurement science to advance assessment of PCROs, particularly HRQL, and offers multidimensional profile measures. The conceptual link of paediatric PROMIS with adult instruments facilitates harmonisation of assessments made in children and adolescents with those carried out in young adults in the process of transition of medical care. Development of electronic versions of questionnaires that permit their completion through smartphones or touch-screen devices will revolutionise information collection from parents and children, foster the regular collection of PCROs in routine care, and ultimately improve the quality of self-reported health data, and patient outcomes.
authors.affiliation: Istituto Giannina Gaslini, Genova; and Università degli Studi di Genova, Italy. alessandroconsolaro@gaslini.org.
authors.forename: Alessandro
authors.initials: A
authors.lastname: Consolaro
authors.affiliation: Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
authors.forename: Esi M
authors.initials: EM
authors.lastname: Morgan
authors.affiliation: Istituto Giannina Gaslini, Genova; and Università degli Studi di Genova, Italy.
authors.forename: Gabriella
authors.initials: G
authors.lastname: Giancane
authors.affiliation: Istituto Giannina Gaslini, Genova; and Università degli Studi di Genova, Italy.
authors.forename: Silvia
authors.initials: S
authors.lastname: Rosina
authors.affiliation: Istituto Giannina Gaslini, Genova, Italy.
authors.forename: Stefano
authors.initials: S
authors.lastname: Lanni
authors.affiliation: Istituto Giannina Gaslini, Genova; and Università degli Studi di Genova, Italy.
authors.forename: Angelo
authors.initials: A
authors.lastname: Ravelli
mesh_terms: D000293:Adolescent; D000367:Age Factors; D002648:Child; D003695:Delivery of Health Care; D004059:Diffusion of Innovation; D004185:Disability Evaluation; D006304:Health Status; D006305:Health Status Indicators; D006801:Humans; D008490:Medical Informatics; D063731:Mobile Applications; D000071066:Patient Reported Outcome Measures; D010372:Pediatrics / Q000379:methods*; D011237:Predictive Value of Tests; D011379:Prognosis; D015203:Reproducibility of Results; D012216:Rheumatic Diseases / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology / Q000628:therapy; D012219:Rheumatology / Q000379:methods*; D012720:Severity of Illness Index; D000068997:Smartphone; D011795:Surveys and Questionnaires; D017216:Telemedicine