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Assessment of Health-Related Quality of Life in Systemic Lupus Erythematosus

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Outcome Measures and Metrics in Systemic Lupus Erythematosus

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Abstract

With the improving life expectancy in systemic lupus erythematosus (SLE), the assessment of health-related quality of life (HRQoL) has become an important outcome measure in these patients. SLE is an autoimmune multisystem disease that tends to affect women of childbearing age and has a significant impact on the HRQoL comparable to that of more common rheumatological and medical illnesses. Assessing HRQoL alongside disease activity and damage captures the patients’ perspective of the impact of the disease and its treatment on their lives. Generic questionnaires, in particular, the SF-36, are the most common questionnaires for assessing HRQoL in SLE. However, in the last 15 years, SLE-specific questionnaires have been developed and validated, and they have the added advantage of assessing issues more relevant to patients with SLE. They are more sensitive to the changes in HRQoL and therefore more useful when assessing patient-reported outcomes in clinical trials of new interventions for SLE patients. This chapter describes the content of generic and SLE-specific measures and presents evidence for the quality of the scale development and psychometric evaluation of the SLE-specific HRQoL scales.

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Abbreviations

ACR:

American College of Rheumatology

AIMS:

Arthritis Impact Measurement Scale

BILAG:

British Isles Lupus Assessment Group

EuroQoL:

European Quality of Life

FDA:

Food and Drug Administration

HRQoL :

Health-related quality of life

LFA:

Lupus Foundation of America

LIT:

Lupus Impact Tracker

L-QoL:

Systemic Lupus Erythematosus Quality of Life

LupusPRO:

Lupus Patient-Reported Outcome

LupusQoL:

Lupus Quality of Life

PGA:

Physician Global Assessment

QoL:

Quality of life

QOL-S:

Quality of Life Scale

SF-20:

Short Form-20

SF-36:

Short Form-36

SIP:

Sickness Impact Profile

SLE:

Systemic lupus erythematosus

SLEDAI:

Systemic Lupus Erythematosus Disease Activity Index

SLEQOL:

Systemic Lupus Erythematosus Quality of Life

SLICC/ACR DI:

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

SSC:

SLE Symptom Checklist

VAS:

Visual Analogue Scale

WHOQOL-BREF:

World Health Organisation Quality of Life – Abbreviated version

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Author information

Authors and Affiliations

  1. Department of Rheumatology, Royal Blackburn Teaching Hospital, Blackburn, UK

    Lee-Suan Teh

  2. Faculty of Clinical and Biomedical Sciences, University of Central Lancashire (UCLan), Preston, UK

    Lee-Suan Teh

  3. Department of Rheumatology, University College London Hospital NHS Foundation Trust, London, UK

    Madhura Castelino

  4. Centre for Musculoskeletal Research, University of Manchester, Manchester, UK

    Madhura Castelino

  5. Division of Musculoskeletal and Dermatological Sciences, University of Manchester, Manchester, UK

    Kathleen McElhone

  6. School of Psychology, University of Central Lancashire, Preston, UK

    Janice Abbott

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  1. Lee-Suan Teh
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  2. Madhura Castelino
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  4. Janice Abbott
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Editors and Affiliations

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

    Zahi Touma

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Teh, LS., Castelino, M., McElhone, K., Abbott, J. (2021). Assessment of Health-Related Quality of Life in 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_12

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