0000000000288718

AUTHOR

Susan Nielsen

showing 7 related works from this author

Proceedings Of The 23Rd Paediatric Rheumatology European Society Congress: Part Two

2017

lcsh:Diseases of the musculoskeletal systemlcsh:RJ1-570lcsh:Pediatricslcsh:RC925-935Meeting Abstracts
researchProduct

The European network for care of children with paediatric rheumatic diseases : Care across borders

2019

Objectives. To provide an overview of the paediatric rheumatology (PR) services in Europe, describe current delivery of care and training, set standards for care, identify unmet needs and inform future specialist service provision. Methods. An online survey was developed and presented to national coordinating centres of the Paediatric Rheumatology International Trials Organisation (PRINTO) (country survey) and to individual PR centres (centre and disease surveys) as a part of the European Union (EU) Single Hub and Access point for paediatric Rheumatology in Europe project. The survey contained components covering the organization of PR care, composition of teams, education, health care and …

Transition to Adult Caremedicine.medical_specialtyBiomedical Researchstandards of careChild Health ServicesPopulationDiseaseHealth Services AccessibilityTransition management (governance)paediatric rheumatology03 medical and health sciences0302 clinical medicineRheumatologyRheumatic DiseasesHealth caremedicineJournal ArticleHumansmedia_common.cataloged_instancePharmacology (medical)030212 general & internal medicineEuropean unionChildeducationIntersectoral Collaborationmedia_common030203 arthritis & rheumatologyService (business)Biological ProductsHealth Services Needs and Demandeducation.field_of_studyEducation Medicalbusiness.industryStandard of CareDrug Utilizationpaediatric rheumatology service provision standards of careEuropeEastern europeanClinical trialHealth Care SurveysFamily medicineservice provisionHealth Services ResearchDrug MonitoringbusinessDelivery of Health CareRheumatology (United Kingdom)
researchProduct

Proceedings of the 23rd Paediatric Rheumatology European Society Congress: part one

2017

lcsh:Diseases of the musculoskeletal systemlcsh:RJ1-570lcsh:Pediatricslcsh:RC925-935Meeting Abstracts
researchProduct

American College of Rheumatology Provisional Criteria for Clinically Relevant Improvement in Children and Adolescents With Childhood-Onset Systemic L…

2019

OBJECTIVE: To develop a Childhood Lupus Improvement Index (CHILI) as a tool to measure response to therapy in childhood-onset systemic lupus erythematosus (cSLE), with a focus on clinically relevant improvement (CRIc SLE ). METHODS: Pediatric nephrology and rheumatology subspecialists (n = 213) experienced in cSLE management were invited to define CRIc SLE and rate a total of 433 unique patient profiles for the presence/absence of CRIc SLE . Patient profiles included the following cSLE core response variables (CRVs): global assessment of patient well-being (patient-global), physician assessment of cSLE activity (MD-global), disease activity index score (here, we used the Systemic Lupus Eryt…

medicine.medical_specialtyOutcome AssessmentHealth Care/methodsAdolescentDelphi TechniqueAntirheumatic Agents/therapeutic useSeverity of Illness IndexChild healthArticle03 medical and health sciences0302 clinical medicineRheumatologyInternal medicineSeverity of illnessOutcome Assessment Health CaremedicinePediatric nephrologyHumansLupus Erythematosus Systemicskin and connective tissue diseasesChild030203 arthritis & rheumatologySystemic lupus erythematosusLupus erythematosusLupus ErythematosusReceiver operating characteristicbusiness.industryConsensus conferencechildhood-onset systemic lupus erythematosusOutcome Assessment Health Care/methodsmedicine.diseaseRheumatologyRheumatologySystemic lupus erythematosusautoimmune inflammatory diseaseAntirheumatic AgentsLupus Erythematosus Systemic/drug therapySystemic/drug therapybusinessAlgorithmsArthritis Care and Research
researchProduct

Phenotypic Variability and Disparities in Treatment and Outcomes of Childhood Arthritis Throughout the World: Results from the EPOCA Study

2018

Background: The characteristics and burden of childhood arthritis have never been studied on a worldwide basis. We aimed to investigate prevalence of disease categories, treatment modalities and disease status across different geographic areas. Methods: International paediatric rheumatologists were asked to enrol a consecutive sample of children with juvenile idiopathic arthritis. Each patient underwent retrospective and cross-sectional assessments, including parent-reported outcomes. Level of disease activity and damage were correlated with wealth of the country, expressed as gross domestic product per capita. Findings: Between 2011 and 2016, 9,081 patients were enrolled at 130 centres in …

medicine.medical_specialtyDisease statusbusiness.industryChildhood arthritisPublic healthDeclarationmedicine.diseaseCONSECUTIVE SAMPLEInformed consentFamily medicinemedicinebusinessBristol-MyersDisease burdenSSRN Electronic Journal
researchProduct

Phenotypic variability and disparities in treatment and outcomes of childhood arthritis throughout the world: an observational cohort study

2019

Made available in DSpace on 2019-10-05T16:54:20Z (GMT). No. of bitstreams: 0 Previous issue date: 2019-04-01 IRCCS Istituto Giannina Gaslini Background To our knowledge, the characteristics and burden of childhood arthritis have never been studied on a worldwide basis. We aimed to investigate, with a cross-sectional study, the prevalence of disease categories, treatment methods, and disease status in patients from across different geographical areas and from countries with diverse wealth status. Methods In this multinational, cross-sectional, observational cohort study, we asked international paediatric rheumatologists from specialised centres to enrol children with a diagnosis of juvenile …

Malemedicine.medical_specialtyChildhood arthritisCross-sectional studyPopulationGlobal HealthPediatrics03 medical and health sciences0302 clinical medicine030225 pediatricsEpidemiologymedicineDevelopmental and Educational PsychologyJournal ArticleHumansPediatrics Perinatology and Child Health; Developmental and Educational Psychology030212 general & internal medicineHealthcare DisparitiesChildeducationDisease burdenPain MeasurementRetrospective Studieseducation.field_of_studyOligoarthritisbusiness.industryPerinatology and Child HealthJuvenile idiopathic arthritismedicine.diseaseJUVENILE IDIOPATHIC ARTHRITIS; OF-RHEUMATOLOGY RECOMMENDATIONS; DISEASE-ACTIVITY SCORE; DEFINING CRITERIA; CLASSIFICATION; CHILDREN; EPIDEMIOLOGY; VALIDATION; COUNTRIES; VALIDITYArthritis Juvenilechildhood arthritisphenotypic variabilityobservational cohort studyCross-Sectional StudiesBiological Variation PopulationSettore MED/38 - PEDIATRIA GENERALE E SPECIALISTICAAntirheumatic AgentsChild PreschoolPediatrics Perinatology and Child HealthQuality of LifeFemalePolyarthritisJuvenile idiopatic arthritis of-rheumatology recommentadions disease-activity score defining criteria classification children epidemiology validation countries validitybusinessDemographyCohort study
researchProduct

Development and initial validation of the macrophage activation syndrome/primary hemophagocytic lymphohistiocytosis score, a diagnostic tool that dif…

2017

OBJECTIVE: To develop and validate a diagnostic score that assists in discriminating primary hemophagocytic lymphohistiocytosis (pHLH) from macrophage activation syndrome (MAS) related to systemic juvenile idiopathic arthritis. STUDY DESIGN: The clinical, laboratory, and histopathologic features of 362 patients with MAS and 258 patients with pHLH were collected in a multinational collaborative study. Eighty percent of the population was assessed to develop the score and the remaining 20% constituted the validation sample. Variables that entered the best fitted model of logistic regression were assigned a score, based on their statistical weight. The MAS/HLH (MH) score was made up with the i…

Male0301 basic medicineHemophagocyticLogistic regressionPediatricshemophagocytic syndrome0302 clinical medicine*diagnostic scoreDiagnosisMedicineCutoffChildprimary hemophagocytic lymphohistiocytosiLymphohistiocytosiseducation.field_of_studyprimary hemophagocytic lymphohistiocytosisPerinatology and Child Healthdiagnostic scoreQuartileSettore MED/38 - PEDIATRIA GENERALE E SPECIALISTICAMacrophage activation syndromeChild Preschool*macrophage activation syndromeAbsolute neutrophil countFemale*primary hemophagocytic lymphohistiocytosisHumanmedicine.medical_specialtyAdolescentPopulationLymphohistiocytosis HemophagocyticDiagnosis Differential03 medical and health sciencesInternal medicineHumansPreschooleducation030203 arthritis & rheumatologyReceiver operating characteristicbusiness.industryInfantReproducibility of Resultsmedicine.diseaseSurgery030104 developmental biologydiagnostic score; hemophagocytic syndrome; macrophage activation syndrome; primary hemophagocytic lymphohistiocytosis; Adolescent; Child; Child Preschool; Diagnosis Differential; Female; Humans; Infant; Lymphohistiocytosis Hemophagocytic; Macrophage Activation Syndrome; Male; Reproducibility of Results; Pediatrics Perinatology and Child HealthMacrophage activation syndromeDifferentialPediatrics Perinatology and Child Health*hemophagocytic syndromeDifferential diagnosisbusiness
researchProduct