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; Teh, L-S

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.

• Journal Article Type: Article
• Publication Date: Aug 1, 2010
• Deposit Date: Sep 30, 2010
• Journal: Lupus
• Print ISSN: 0961-2033
• Electronic ISSN: 1477-0962
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 19
• Issue: 14
• Pages: 1640-1647
• DOI: https://doi.org/10.1177/0961203310378668
• Publisher URL: http://dx.doi.org/10.1177/0961203310378668
• Related Public URLs: http://www.uk.sagepub.com/journals/Journal201819