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Patient-Reported Outcomes in SLE

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Outcome Measures and Metrics in Systemic Lupus Erythematosus

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Abstract

Patient-reported outcomes are questionnaires designed to measure health-related quality of life (HRQoL). This is important to measure in SLE because the burden of symptoms that patients experience is often not reflected in measures of disease activity, leading to a discordance in the way patients versus clinicians perceive disease state. As a result, questionnaires that are specific to the experience of patients with SLE have been developed in addition to generic PROs. Utilizing PROs encourages clinical conversations, engaging patients as stakeholders in their own care. Working toward this patient empowerment, PROs can be integrated into clinics with minor adjustments to work flow; electronic administration and the utilization of spydergrams increases efficiency and interpretability. Because PROs measure aspects of HRQoL that often cannot be addressed by medication alone, building toward integrated care and connecting patients to interdisciplinary resources will be key in maximizing the benefit of PROs.

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Authors and Affiliations

  1. Division of Rheumatology, Department of Medicine, Washington University School of Medicine, St. Louis, MO, USA

    Lily McMorrow & Alfred H. J. Kim

  2. Department of Behavioral Science and Health Education, College for Public Health and Social Justice, Saint Louis University, St. Louis, MO, USA

    Jerik Leung

  3. Division of Immunology & Rheumatology, Department of Medicine, Stanford University School of Medicine, Palo Alto, CA, USA

    Vibeke Strand

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  1. Lily McMorrow
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  2. Jerik Leung
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  3. Vibeke Strand
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  4. Alfred H. J. Kim
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Correspondence to Alfred H. J. Kim .

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

    Zahi Touma

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McMorrow, L., Leung, J., Strand, V., Kim, A.H.J. (2021). Patient-Reported Outcomes in SLE. In: Touma, Z. (eds) Outcome Measures and Metrics in Systemic Lupus Erythematosus. Springer, Cham. https://doi.org/10.1007/978-3-030-73303-2_11

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  • DOI: https://doi.org/10.1007/978-3-030-73303-2_11

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