Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts: a qualitative study
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 phenom...
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| Veröffentlicht in: | Lupus 2010-12, Vol.19 (14), p.1640-1647 |
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| creator | McElhone, K. Abbott, J. Gray, J. Williams, A. Teh, L-S. |
| description | 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. |
| doi_str_mv | 10.1177/0961203310378668 |
| format | Article |
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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. 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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. 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| subjects | Adult Aged Body Image Fatigue - epidemiology Fatigue - etiology Female Humans Interview, Psychological Lupus Erythematosus, Systemic - physiopathology Lupus Erythematosus, Systemic - psychology Memory Disorders - epidemiology Memory Disorders - etiology Middle Aged Pain - epidemiology Pain - etiology Pregnancy Prognosis Qualitative research Quality of Life Young Adult |
| title | Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts: a qualitative study |
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