To Örebro University

oru.seÖrebro University Publications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Patient-Reported Outcomes in Systemic Lupus Erythematosus: Can Lupus Patients Take the Driver's Seat in Their Disease Monitoring?
Örebro University, School of Medical Sciences. Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet and Karolinska University Hospital, Stockholm, Sweden; Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.ORCID iD: 0000-0002-4875-5395
Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet and Karolinska University Hospital, Stockholm, Sweden; Division of Rheumatology, Department of Internal Medicine 3, Medical University of Vienna, Vienna, Austria.
2022 (English)In: Journal of clinical medicine, E-ISSN 2077-0383, Vol. 11, no 2, article id 340Article, review/survey (Refereed) Published
Abstract [en]

Systemic lupus erythematosus (SLE) is a chronic autoimmune disorder that has detrimental effects on patient's health-related quality of life (HRQoL). Owing to its immense heterogeneity of symptoms and its complexity regarding comorbidity burden, management of SLE necessitates interdisciplinary care, with the goal being the best possible HRQoL and long-term outcomes. Current definitions of remission, low disease activity, and response to treatment do not incorporate self-reported patient evaluation, while it has been argued that the physician's global assessment should capture the patient's perspective. However, even the judgment of a very well-trained physician might not replace a patient-reported outcome measure (PROM), not only owing to the multidimensionality of self-perceived health experience but also since this notion would constitute a direct contradiction to the definition of PROMs. The proper use of PROMs is not only an important conceptual issue but also an opportunity to build bridges in the partnership between patients and physicians. These points of consideration adhere to the overall framework that there will seldom be one single best marker that helps interpret the activity, severity, and impact of SLE at the same time. For optimal outcomes, we not only stress the importance of the use of PROMs but also emphasize the urgency of adoption of the conception of forming alliances with patients and facilitating patient participation in surveillance and management processes. Nevertheless, this should not be misinterpreted as a transfer of responsibility from healthcare professionals to patients but rather a step towards shared decision-making.

Place, publisher, year, edition, pages
MDPI, 2022. Vol. 11, no 2, article id 340
Keywords [en]
health-related quality of life, patient perspective, patient-reported outcomes, person-centred care, shared decision, systemic lupus erythematosus
National Category
Rheumatology and Autoimmunity
Identifiers
URN: urn:nbn:se:oru:diva-96812DOI: 10.3390/jcm11020340ISI: 000747272200001PubMedID: 35054036Scopus ID: 2-s2.0-85122707827OAI: oai:DiVA.org:oru-96812DiVA, id: diva2:1633123
Available from: 2022-01-28 Created: 2022-01-28 Last updated: 2022-02-07Bibliographically approved

Open Access in DiVA

No full text in DiVA

Other links

Publisher's full textPubMedScopus

Authority records

Parodis, Ioannis

Search in DiVA

By author/editor
Parodis, Ioannis
By organisation
School of Medical Sciences
Rheumatology and Autoimmunity

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 21 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf