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Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts - a qualitative study

McElone, K, Abbott, J, Gray, J, Williams, AE and Teh, L-S 2010, 'Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts - a qualitative study' , Lupus .

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    Abstract

    We sought to understand the patients’ ‘lived experiences of systemic lupus erythematosus (SLE)’ by exploring, describing and clarifying the patients’ perspective of how they felt about having SLE and how the disease impacted on their lives, both positively and/or negatively. An interpretative phenomenological approach was employed. Semi-structured interviews were undertaken with 30 females with SLE across a wide range of age (21 to 75 years), disease characteristics, disease duration (1 to 28 years) and ethnicity (Whites, South Asians). Eleven themes emerged as important to the patients: prognosis and course of disease; body image; effects of treatment; emotional difficulties; inability to plan due to disease unpredictability; fatigue; pain; career prospects and loss of income; memory loss/concentration; reliance on others to assist with everyday tasks; and pregnancy issues. Most patients reported a negative impact of SLE on their lives although a few patients found positive aspects to having SLE. The findings of this study identified themes important to patients with SLE and these themes will inform clinicians on the patients’ perspective of having SLE.

    Item Type: Article
    Themes: Subjects / Themes > R Medicine > R Medicine (General)
    Health and Wellbeing
    Schools: Colleges and Schools > College of Health & Social Care > School of Health Sciences > Centre for Health Sciences Research
    Colleges and Schools > College of Health & Social Care
    Colleges and Schools > College of Health & Social Care > School of Health Sciences
    Journal or Publication Title: Lupus
    Publisher: Sage Publications
    Refereed: Yes
    ISSN: 0961-2033
    Depositing User: AE Williams
    Date Deposited: 30 Sep 2010 12:24
    Last Modified: 20 Aug 2013 17:26
    URI: http://usir.salford.ac.uk/id/eprint/10261

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