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Variation in pain related to systemic lupus erythematosus (SLE): a 7-year follow-up study
Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden.
Department of Medicine, Unit for Gastroenterology and Rheumatology, Karolinska Institutet, Stockholm, Sweden.
Primary Health Care Unit, Department of Public Health and Community Medicine, Institute of Medicine, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Spenshult Research and Development Center, Halmstad, Sweden; Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden.
Unit of Immunology and Chronic Disease, Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden.
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2018 (English)In: Clinical Rheumatology, ISSN 0770-3198, E-ISSN 1434-9949, Vol. 37, no 7, p. 1825-1834Article in journal (Refereed) Published
Abstract [en]

We have previously shown that most patients with systemic lupus erythematosus (SLE) reported low degree of SLE-related pain. However, 24% of the patients reported high degree of SLE-related pain, more fatigue, anxiety and depression, and worse health-related quality of life (HRQoL). To explore SLE-related pain, the presence of long-standing widespread pain, and patient-reported outcomes (PROs) after 7 years. Sixty-four out of 84 patients participated in a 7-year follow-up of the original survey and completed the same questionnaires answered at inclusion: pain (VAS 100 mm), fatigue (MAF), HRQoL (SF-36), anxiety and depression (HADS), and, if appropriate, a pain-drawing. Differences between inclusion and follow-up (change) were calculated. The patients with a low degree of SLE-related pain at inclusion reported no changes at follow-up in pain and PROs except for worsening in physical function in SF-36, median change (IQR) 0 (- 10 to 5), p = 0.024. Half of the patients with high degree of pain at inclusion reported decreased pain at follow-up, median change (IQR) 45 (35 to 65), p = 0.021; fatigue, 8 (8 to 17), p = 0.018; anxiety, 4 (1 to 4), p = 0.035; and depression, 4 (2 to 5), p = 0.018 and improvements in most dimensions of SF-36. The remaining half of the patients reported no changes regarding pain and PROs except for a worsening in vitality in SF-36, 20 (15 to 35), p = 0.0018. All patients with remaining high level of pain indicated long-standing widespread pain. After 7 years, a subgroup of patients with SLE reported remaining high level of SLE-related pain and a high symptom burden, including long-standing widespread pain. Such patients require more observant attention to receive appropriate treatment.

Place, publisher, year, edition, pages
Springer, 2018. Vol. 37, no 7, p. 1825-1834
Keywords [en]
Anxiety, Depression, Fatigue, Health-related quality of life, Pain, SLE
National Category
Medical and Health Sciences Rheumatology and Autoimmunity
Identifiers
URN: urn:nbn:se:oru:diva-70527DOI: 10.1007/s10067-018-4079-1ISI: 000435599200011PubMedID: 29654486Scopus ID: 2-s2.0-85045244134OAI: oai:DiVA.org:oru-70527DiVA, id: diva2:1298531
Funder
Swedish Rheumatism AssociationStockholm County CouncilThe Karolinska Institutet's Research FoundationLinköpings universitet
Note

Funding Agencies:

King Gustav V 80 Year's Foundation

Swedish Society of Nursing

Available from: 2019-03-24 Created: 2019-03-24 Last updated: 2019-06-18Bibliographically approved

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Welin, Elisabet

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