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[null,null,"Titolo",null,"Outcome measures and metrics in systemic lupus erythematosus / / edited by Zahi Touma"]
[null,null,"Pubbl/distr/stampa",null,"Cham, Switzerland : , : Springer, , [2021]"]
[{"$nulls":4},"©2021"]
[null,null,"ISBN",null,"3-030-73303-3"]
[null,null,"Descrizione fisica",null,"1 online resource (421 pages)"]
[null,null,"Disciplina",null,"616.772"]
[null,null,"Soggetti",null,"Systemic lupus erythematosus - Diagnosis"]
[{"$nulls":4},"Lupus eritematós"]
[{"$nulls":4},"Diagnòstic"]
[{"$nulls":4},"Llibres electrònics."]
[null,null,"Lingua di pubblicazione",null,"Inglese"]
[null,null,"Formato",null,"Materiale a stampa"]
[null,null,null,"Livello bibliografico","Monografia"]
[null,null,null,"Note generali","Includes index."]
[null,null,"Nota di contenuto",null,"Intro -- Preface -- Acknowledgment -- Contents -- Contributors -- Chapter 1: Introduction: Metrics and Domains Measured in SLE -- Introduction -- Core Set of Domains in SLE, Classification, and Response Criteria -- Core Domain 1: Disease Activity -- Core Domain 2: Chronic Damage Resulting from Lupus Activity or Its Treatment -- Disease Activity and Damage in Special Circumstances: Childhood and Pregnancy -- Childhood -- Pregnancy -- Core Domain 3: Health-Related Quality of Life -- Core Domains 4: Adverse Events of Drugs -- Core Domain 5: Economic Impact -- Emerging Concepts in SLE and Deep Insights on Selected Concepts -- Cognitive Impairment -- Depression and Anxiety -- Fatigue and Pain -- Frailty -- Instrument Selection: The OMERACT Process -- Facilitating Development of Response Criteria and Classification Criteria: EULAR/ACR Collaborative Projects -- Conclusion -- Bibliography -- Chapter 2: Clinical Aspects of Systemic Lupus Erythematosus -- Introduction -- Classification of SLE -- General Manifestations -- Cutaneous Manifestations -- Acute Cutaneous Lupus -- Chronic Cutaneous Lupus -- Non-specific Cutaneous Lesions -- Musculoskeletal Features -- Lupus Myositis -- Other Musculoskeletal Manifestations -- Renal Manifestations -- Neuropsychiatric Manifestations -- Gastrointestinal Involvement -- Mucocutaneous Lesions -- Lupus Enteritis -- Serositis -- Associated Hepatobiliary Manifestations -- Hematologic "]
[{"$nulls":4},"Manifestations -- Pulmonary Involvement -- Cardiac Manifestations -- Accelerated Atherosclerosis -- References -- Chapter 3: Diagnosis and Classification of Systemic Lupus Erythematosus -- Introduction -- Classification Criteria Are Not Diagnostic Criteria -- 2019 EULAR/ACR Classification Criteria -- Item Generation and New Insights About What Constitutes SLE -- Phase 2. Reducing the Number of Criteria and Other Lessons Learned."]
[{"$nulls":4},"Phase 3. Weighting and Threshold Identification -- Phase 4. Validation -- Summary -- References -- Chapter 4: Challenges and Advances in SLE Autoantibody Detection and Interpretation -- Introduction -- Important Considerations in Interpretation of ANA Test Results and Reports -- Specific Autoantibodies -- Chromatin Components -- Double-Stranded DNA -- Histones -- Nucleosomes -- High-Mobility Group Proteins -- Dense Fine Speckled (DFS) -- Small Nuclear Ribonucleoproteins: Sm and U1-RNP -- DNA-Dependent Protein Kinase (DNA-PK/Ku) -- Other Nuclear Targets -- Sjögren Syndrome Antigen B/La -- Cytoplasmic -- Ribosomal P -- Ro60/SSA -- Ro52/TRIM21 -- Cell Cycle -- Proliferating Cell Nuclear Antigen -- Extracellular -- C1q -- Phospholipids and Related Antigens [128] -- Cardiolipin -- β2-glycoprotein 1 -- Non-criteria Autoantibodies: Phosphatidylserine/Prothrombin Complex -- Orphan Autoantibodies -- Summary -- References -- Chapter 5: Childhood-Onset Systemic Lupus Erythematosus (cSLE): Is It Really Different Than Adult-Onset SLE? -- Introduction -- What Is cSLE? -- Epidemiology -- Incidence and Prevalence -- Sex Predominance -- Genetics -- Classification Criteria -- Race -- Race and Disease Manifestations Overall -- Race, Disease Manifestations, and Age of Onset -- Race, SLE Outcomes, and Age of Onset -- Medication Use -- Growth and Development -- Mental Health -- Social Outcomes -- Summary -- References -- Chapter 6: Metrics in Disease Activity Measures in Systemic Lupus Erythematosus -- Introduction -- Principles for the Assessment of SLE Patients -- Disease Activity Indices -- Global Indices -- Systemic Lupus Erythematosus Disease Activity Index and Its Versions -- Mexican Version of the SLEDAI (Mex-SLEDAI) -- Safety of Estrogens in Lupus Erythematosus National Assessment Trial (SELENA)-SLEDAI -- SLEDAI-2000 (SLEDAI-2K) -- SLEDAI-2K: 30-Day Version."]
[{"$nulls":4},"SLEDAI-2K Glucocorticoid Index (SLEDAI-2KG) -- Systemic Lupus Activity Measure (SLAM) -- European Consensus Lupus Activity Measurement (ECLAM) -- Lupus Activity Index -- SLE Activity Index Score -- British Isles Lupus Assessment Group (BILAG) Index -- Organ-Specific Indices -- Renal Outcome Measures -- Cutaneous Lupus Erythematosus Disease Area and Severity Index -- Measures of Disease Activity over Time -- Adjusted Mean SLEDAI-2K -- Responder Measures -- Flares -- Improvement -- Responder Index for Lupus Erythematosus -- SLE Responder Index -- BILAG-Based Composite Lupus Assessment (BICLA) -- SLEDAI-2K Responder Index 50 -- Measures of Clinically Meaningful Change in Disease Activity -- Improvement -- Flare and Persistently Active Disease -- Assessment of Disease Activity in Special Patient Groups -- Childhood -- Pregnancy -- Low Disease Activity in SLE -- References -- Chapter 7: Metrics of Damage in SLE -- The Concept of Damage in SLE -- Conceptualization and Development of a Damage Index -- SLICC/ACR Damage Index (SDI) and Adaptations -- Psychometric Properties: Putting SDI to the Test -- Validity Measures -- Reliability and Sensitivity to Change -- Predicative Ability -- Critical Appraisal and Overall Value of SDI -- Next Steps -- References -- Chapter 8: Metrics and Outcome Measures of Disease Activity and Damage in Childhood-Onset Systemic Lupus Erythematosus -- Introduction -- "]
[{"$nulls":4},"Disease Measures of Global Disease Activity -- Systemic Lupus Erythematosus Disease Activity Index -- Safety of Estrogens in Lupus National Assessment-Systemic Lupus Erythematosus Disease Activity Index and Flare Tool -- Systemic Lupus Activity Measure -- Systemic Lupus Activity Questionnaire -- British Isles Lupus Assessment Group Index -- European Consensus Lupus Activity Measurement -- Disease Measure of Global Damage in cSLE."]
[{"$nulls":4},"Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index -- Measures of Flare and Response to Therapy for Use in cSLE -- BILAG Flare Tool -- Systemic Lupus Erythematosus Responder Index -- Pediatric-Specific Measures of Clinically Relevant Change in SLE Course -- Pediatric Rheumatology International Trials Organization Provisional Criteria of Response to Therapy -- Childhood Lupus Improvement Index -- Organ-Specific Measures -- Lupus Nephritis,Response to Therapy and Lupus Nephritis Flare -- Renal Activity Index for Lupus Nephritis -- Cutaneous Lupus Erythematosus Disease Area and Severity Index -- Pediatric Automated Neuropsychological Assessment Metrics -- Health-Related Quality of Life and Other Patient-Reported Outcomes -- Child Health Questionnaire -- Simple Measure of Impact of Lupus Erythematosus in Youngsters -- Pediatric Quality of Life Inventory -- Functional Disability Inventory -- Pediatric Skindex-27 -- Patient-Reported Outcomes Measurement Information System -- Summary -- References -- Chapter 9: Pregnancies in Lupus: Monitoring and Metrics -- Pregnancy Outcomes in SLE -- Monitoring -- Metrics in Observational Studies of SLE Pregnancies -- Administrative Databases -- Claim-Based Databases -- Population-Based Registers -- Advantages of Administrative Databases for Reproductive Studies in SLE -- Prospective Pregnancy Cohorts -- Limitations in Observational Studies of Reproductive Outcomes in SLE: Differences Between Pregnancy and Birth -- Early Pregnancy Complications and Loss -- Timing of Pregnancy -- Parity and Repeated Events -- Measuring Drug Exposures -- Ascertaining Congenital Malformations -- Unmeasured Confounders -- Immortal Time Bias -- Timing of SLE Diagnosis in Relation to Pregnancy -- Conclusion -- References -- Chapter 10: Digital Data in Lupus: Metrics and Future Directions."]
[{"$nulls":4},"Introduction -- Section I: Major Types of Digital Data -- Electronic Health Records -- Administrative Data -- Registries -- Biobank Data with Linkage -- Social Media -- Wearables -- Section II: Caveats -- Defining SLE -- Incomplete Information -- Misclassification and Measurement Error -- Selection Bias -- Future Directions -- References -- Chapter 11: Patient-Reported Outcomes in SLE -- Overview of Current PRO Measures -- Generic Patient-Reported Outcomes -- Medical Outcomes Survey Short Form 36 (SF-36) -- The Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) Scale -- National Institute of Health Initiative Patient-Reported Outcome Measurement Information System (PROMIS) Global Health -- Disease-Specific PROs -- LupusQoL -- LupusPRO -- Lupus Impact Tracker (LIT) -- Additional PROs -- Use as Cost-Utility Measures -- SF-6D -- Euro-QoL 5D -- Application of PROs -- Logistical Considerations for Implementation -- Interpretation of PROs -- Illustration of Potential Clinical Use: Spydergrams -- Increasing Actionability -- References -- Chapter 12: Assessment of Health-Related Quality of Life in Systemic Lupus Erythematosus -- Introduction -- How Can Systemic Lupus Erythematosus Affect the Patient's Quality of Life? -- Why Is It Important to Measure Health-Related Quality of Life in Systemic Lupus Erythematosus? -- Measures Used for Assessing Health-Related Quality of Life in Systemic Lupus Erythematosus and Comparisons Between "]
[{"$nulls":4},"These Measures -- Generic and Condition-Specific Measures Used in Adults with SLE -- SLE-Specific Health-Related Quality of Life Measures for Use in Adults -- Systemic Lupus Erythematosus Quality of Life (L-QoL) -- Systemic Lupus Erythematosus Symptom Checklist (SSC) -- Systemic Lupus Erythematosus Quality of Life (SLEQOL) -- LupusQoL -- Lupus Patient-Reported Outcome (LupusPRO) -- Lupus Impact Tracker (LIT)."]
[{"$nulls":4},"Comparison of Psychometric Properties of Adult Health-Related Quality of Life Measures in Systemic Lupus Erythematosus."]