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  • 1.
    Waldheim, E.
    et al.
    Unit of Rheumatology, Karolinska University Hospital, Huddinge,Stockholm, Sweden & Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Sweden.
    Elkan, A.-C.
    Unit of Rheumatology, Karolinska University Hospital, Huddinge, Stockholm, Sweden & Department of Medicine, Karolinska Institutet, Huddinge, Sweden & Institute of Environmental Medicine, Karolinska Institutet, Sweden.
    Bergman, Stefan
    Research and Development Centre, Spenshult Hospital, Sweden & Department of Rheumatology, Clinical Sciences, Lund University, Sweden.
    Frostegård, J.
    Institute of Environmental Medicine, Unit of Immunology and Chronic Disease, Karolinska Institutet, Sweden.
    Van Vollenhoven, R.
    Unit of Rheumatology, Karolinska University Hospital, Huddinge, Stockholm, Sweden & Department of Medicine, Karolinska Institutet, Solna, Sweden.
    Henriksson, E. W.
    Unit of Rheumatology, Karolinska University Hospital, Huddinge, Stockholm, Sweden & Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Sweden.
    Extent and characteristics of self-reported pain in patients with systemic lupus erythematosus2013In: Lupus, ISSN 0961-2033, E-ISSN 1477-0962, Vol. 22, no 2, p. 136-143Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Patients' own experiences of subjective symptoms are scarcely covered, and the objective of this study was to investigate the extent and characteristics of self-reported pain in patients with systemic lupus erythematosus (SLE).

    METHODS: This study comprised a cross-sectional design where 84 patients with SLE were asked to complete self-assessments: visual analogue scale of pain and the Short-Form McGill Pain Questionnaire. Medical assessments, including ESR, SLAM, SLEDAI, and SLICC, were also performed.

    RESULTS: Of the study population, 24% reported higher levels of SLE-related pain (≥40 mm on VAS). This group had a significantly shorter disease duration, higher ESR, and higher disease activity, according to the SLAM and SLEDAI, compared to the rest of the study population. This group mainly used the words "tender," "aching," and "burning" to describe moderate and severe pain, and they used a greater number of words to describe their pain. Of the patients with higher levels of pain, 70% reported their present pain as "distressing." The most common pain location for the whole patient population was the joints. Patients rated their disease activity significantly higher than physicians did.

    CONCLUSION: These findings expand the current knowledge of the extent of SLE-related pain and how patients perceive this pain. The results can contribute to affirmative, supportive and caring communication and especially highlight SLE-related pain in patients with a short disease duration and high disease activity.

  • 2.
    Waldheim, E.
    et al.
    Unit of Rheumatology, Karolinska University Hospital, Sweden & Division of Nursing, Department of Neurobiology, Karolinska Institutet, Sweden.
    Elkan, A.-C.
    Innovation and Development SRQ (Swedish Rheumatology Quality Register), Dept. of Rheumatology, Karolinska University Hospital, Sweden & Institute of Environmental Medicine, Karolinska Institutet, Sweden.
    Pettersson, S.
    Unit of Rheumatology, Karolinska University Hospital, Sweden & Division of Nursing, Department of Neurobiology, Karolinska Institutet, Sweden.
    Van Vollenhoven, R.
    Unit of Rheumatology, Karolinska University Hospital, Sweden & Department of Medicine, Solna, Karolinska Institutet, Sweden.
    Bergman, Stefan
    Research and Development Centre, Spenshult Hospital, Sweden & Department of Rheumatology, Clinical Sciences, Lund University, Sweden.
    Frostegård, J.
    Institute of Environmental Medicine, Unit of Immunology and Chronic Disease, Karolinska Institutet, Sweden.
    Welin Henriksson, E.
    Unit of Rheumatology, Karolinska University Hospital, Sweden & Division of Nursing, Department of Neurobiology, Karolinska Institutet, Sweden.
    Health-related quality of life, fatigue and mood in patients with SLE and high levels of pain compared to controls and patients with low levels of pain2013In: Lupus, ISSN 0961-2033, E-ISSN 1477-0962, Vol. 22, no 11, p. 1118-1127Article in journal (Refereed)
    Abstract [en]

    Objective The objective of this paper is to investigate health-related quality of life (HRQoL), fatigue, anxiety and depression in patients with systemic lupus erythematosus (SLE) and higher levels of pain and to compare them to patients with lower levels of pain and controls.

    Method Patients were dichotomized into two groups based on SLE-related pain score on the visual analog scale (VAS): low-pain group (76%, n=64, VAS 0-39 mm) and high-pain group (24%, n=20, VAS 40-100 mm). Sex- and age-matched controls were randomly selected from the general population. Participants were asked to complete questionnaires regarding self-reported pain, HRQoL, fatigue, anxiety and depression. Medical assessments also were recorded.

    Result Fatigue score in the high-pain group (median, 36.5; interquartile range (IQR), 32.5-39.7) was significantly higher (p<0.001) compared to the low-pain group (median, 23; IQR, 14.6-34.1), as well as scores for anxiety (median, 9; IQR, 6.5-11.5) and depression (median, 7.5; IQR, 5.5-9) (p<0.001). The high-pain group had significantly lower scores compared to the low-pain group in all dimensions in the SF-36 (p ≤ 0.001-0.007). No statistical differences were detected between the low-pain group and controls in any measurement except for the dimensions physical function, general health, vitality and social function in SF-36.

    Conclusion Patients with SLE scoring higher degrees of pain were burdened with more fatigue, anxiety and depression and lower levels of HRQoL compared to patients with lower levels of pain who did not differ significantly from the general population in most dimensions. These results elucidate the importance of identifying patients with higher degrees of pain who are probably in need of more extensive multidimensional interventions to decrease symptom burden.

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