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Metrics and Outcome Measures of Disease Activity and Damage in Childhood-Onset Systemic Lupus Erythematosus

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Outcome Measures and Metrics in Systemic Lupus Erythematosus

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Abstract

Childhood-onset systemic lupus erythematosus (cSLE) is a multisystemic, autoimmune disease with a significant impact on the quality of life characterized by periods of disease flares that are followed by improvement with anti-inflammatory therapy. Duration and severity of disease are related to damage accrual. Conversely, minimally acceptable disease activity and disease remission are associated with good patient outcomes. In cSLE, accurate capture of the extent of active disease and damage is paramount as damage accrual and mortality rates in children are higher compared to adults. Thus, global disease activity and damage metrics, as well as health-related quality of life indices have been developed as means of monitoring disease in an effort of adjusting therapy accordingly. This chapter focuses on disease metrics and outcome measures validated for use in cSLE.

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Abbreviations

ACR:

American College of Rheumatology

BILAG:

British Isles Lupus Assessment Group

CHILI:

Childhood Lupus Improvement Index

CHQ:

Child Health Questionnaire

CHQ-P50:

50-item parent-proxy report of CHQ

CLASI:

Cutaneous Lupus Erythematosus Disease Area and Severity Index

CRI:

Clinically relevant improvement

cSLE:

Childhood-onset systemic lupus erythematosus

ECLAM:

European Consensus Lupus Activity Measurement

FDI:

Functional Disability Inventory

GFR:

Glomerular filtration rate

HRQoL:

Health-related quality of life

LN:

Lupus nephritis

PedANAM:

Pediatric Automated Neuropsychological Assessment Metrics

PedsQL:

Pediatric Quality of Life Inventory

PedsQL-MFS:

Pediatric Quality of Life Multidimensional Fatigue Scale

PedsQL-GC:

Pediatric Quality of Life 4.0 Generic Core Scale

PedsQL-RM:

Pediatric Quality of Life 3.0 Rheumatology Module

PGA:

Physician global assessment

PhS:

Physical summary score

PRINTO:

Pediatric Rheumatology International Trials Organization

PRO:

Patient-reported outcome

PROMIS:

Patient-Reported Outcomes Measurement Information System

pSkindex-27:

Pediatric Skindex-27

PsS:

Psychosocial summary score

QoL:

Quality of life

RAIL:

Renal Activity Index for Lupus Nephritis

SDI:

Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index

SELENA:

Safety of Estrogens in Lupus National Assessment

SLAM:

Systemic Lupus Activity Measure

SLAQ:

Systemic Lupus Activity Questionnaire

SLE:

Systemic lupus erythematosus

SLEDAI:

Systemic Lupus Erythematosus Disease Activity Index

SMILEY:

Simple Measure of Impact of Lupus Erythematosus in Youngsters

SRI:

Systemic Lupus Erythematosus Responder Index

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Authors and Affiliations

  1. Department of Pediatric Rheumatology, Ankara University School of Medicine, Ankara, Turkey

    Pinar Ozge Avar-Aydin

  2. Department of Rheumatology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA

    Katherine Schultz & Hermine I. Brunner

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  1. Pinar Ozge Avar-Aydin
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Correspondence to Hermine I. Brunner .

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  1. Medicine, University of Toronto, Toronto, ON, Canada

    Zahi Touma

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Avar-Aydin, P.O., Schultz, K., Brunner, H.I. (2021). Metrics and Outcome Measures of Disease Activity and Damage in Childhood-Onset Systemic Lupus Erythematosus. In: Touma, Z. (eds) Outcome Measures and Metrics in Systemic Lupus Erythematosus. Springer, Cham. https://doi.org/10.1007/978-3-030-73303-2_8

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