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

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.

An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life

“…This finding is consistent with previous studies showing that pain and fatigue influenced HRQoL in patients with SLE (3,36). Fatigue and pain are thus well-known symptoms that need more attention if we strive to improve the care of patients with SLE.…”

“…Disease activity often varies over time and subjective symptoms are described as being prominent (2,3). Both clinical care and research assessments are traditionally focused on predefined aspects of SLE (e.g., selected symptoms or aspects of disease impact) in which patients are asked to rate or assess different parameters according to chosen standards.…”

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

“…This study demonstrates the responsiveness of the instrument and further construct validity as compared with the SF‐36 and provides the MIDs. The SF‐36 and the LupusQoL are similar in terms of responsiveness, but the items on the LupusQoL were informed by patients with SLE, and therefore it has the advantage of several SLE‐specific domains that are important to patients (planning, burden to others, intimate relationships, and body image) 9 that are not captured by the SF‐36.…”

“…The LupusQoL is a valid, reliable, patient‐derived, disease‐specific HRQOL measure for adults with SLE 8 that contains items/domains more relevant to patients with SLE than generic measures 9. As with many HRQOL measures, the interpretation of the data may be problematic and should not be based solely on P values, especially if HRQOL is a secondary outcome when a trial tends not to be powered for HRQOL.…”

Importance of health-related quality of life and its current assessment tools in patients with systemic lupus erythematosus

“…Чаще всего это связано с наличием высыпаний на коже, ее рубцовыми изменениями при дискоидной СКВ, алопецией, а также с увеличение массы тела, истончением кожи, появ-лением стрий вследствие терапии ГК [21]. Исследование образа тела и сексуальной функции у 54 пациенток с СКВ и сравнение этих данных с аналогичными показателями у 29 здоровых женщин выявило, что нарушение образа тела при СКВ отчетливо связано с депрессией и усталостью.…”