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Symptom distress related to systemic lupus erythematosus, analysis of patient account and comparison to standardised assessment
Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.ORCID iD: 0000-0003-4736-500X
2010 (English)In: The European league against rheumatism, Rom, Italien, 2010Conference paper, Published paper (Other academic)
Abstract [en]

Background: Systemic lupus erythematosus (SLE) is a heterogenic disease with individual variation of both organ involvement and symptom perception. Despite this broad spectrum of symptoms clinical assessment often focus on predefined aspects of the disease, where patients are asked to rate or assess according to standards. An open approach to different aspects of the disease where the question of which SLE symptom patients perceive as most distressing need more specific attention. This abstract has focus on the most troublesome SLE related symptoms as reported by the patients themselves. Objectives: To explore patient reported SLE symptoms in relation to age and disease duration, and comparison with instruments assessing disease activity and health related quality of life. Methods: Patients with SLE (=4 ACR criteria)(n=309 women 91,3%, mean-age 47,3yrs, mean disease-duration 15,2yrs) recruited to a cross-sectional cohort study answered the written question "What SLE related symptoms have you experienced as most difficult during your disease?" followed by "What symptoms do you presently perceive as most difficult?" together with a questionnaire assessing health-related quality of life (EQ5D). The inclusion also included an assessment by a rheumatologist regarding disease activity and disease damage. Results: The respondent's answers included a broad spectrum of symptoms. A list of codes was validated and used to sort each patient's statements. Twenty categories with statements from more than ten respondents were identified. The three most frequent categories were distress of fatigue and distress of pain (statements from 51% respondents each) and distress from musculoskeletal structures (46,3%). Each category was compared according to respondent's age and disease duration. Patients with distress related to kidney function (mean 41,7yrs p=0,018) or swelling (mean 41,6yrs p=0,041) were younger. Respondents reporting distress from eyes or mouth were older (mean 53,1 yrs, p= 0,007). Patients (10%) perceiving no present symptom at inclusion had lower disease activity (SLAM, p<0,001) and SLE disease damage (SLICC, p=0,013) and higher self-rated health-related quality of life (EQ5D, p<0,001) than those reporting any kind of symptom distress. Conclusion: The symptoms most frequent reported by patients with SLE were fatigue, pain and musculoskeletal distress and these were described independent of age or disease duration. The disease activity score SLAM covered most patient-reported SLE related distress. When EQ5D were added to the comparison, distress related to perceived physical ability was also identified. Neither SLAM nor EQ5D mentions distress related to treatment, assessment or examination, and healthcare-givers should have this in mind when meeting these patients. Other categories not covered by SLAM combined by EQ5D were swelling and infections. These symptoms were reported by few patients and can be described to have the character of general discomfort. The study indicates that a combination of standardised instruments might well discover patient's perception of SLE, but are unlikely to point out each patient's whole experience of disease related discomfort. This should be taken into account by care-givers in the clinic to enable acknowledgement of the individual person's experience of the disease.

Place, publisher, year, edition, pages
Rom, Italien, 2010.
Identifiers
URN: urn:nbn:se:du-5168OAI: oai:dalea.du.se:5168DiVA: diva2:522234
Conference
The European league against rheumatism , Rom, Italien, 16-19 juni, 2010
Available from: 2010-12-28 Created: 2010-12-28 Last updated: 2015-06-23Bibliographically approved

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Citation style
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