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Fatigue, health-related quality of life and other patient-reported outcomes in systemic lupus erythematosus

https://doi.org/10.1016/j.berh.2013.07.009Get rights and content

Abstract

Objective

This chapter aims to evaluate current knowledge of the burden of systemic lupus erythematosus (SLE) on individual patients, with a particular focus on health-related quality of life (HRQoL), activities of daily living (ADLs), individual symptoms, such as fatigue and pain, work disability and employment.

Methodology

A literature search was performed in Medline (PubMed) and a qualitative analysis was done of all publications relating to the burden of SLE (January 2000 to May 2010, updated in June 2013) matching the following inclusion criteria: prospective studies involving ≥100 patients with SLE; studies focussing on QoL, ADL, function/disability, patient perceptions/experience of their illness, physical/psychological/social impact, unmet needs, work disability/employment status or specific signs/symptoms expected to impact on HRQoL/ADL; studies predominantly involving patients of Caucasian ethnicity; and studies based in Europe, North America or Australia. Studies in juvenile patients; studies of the impact of obesity; studies of non-pharmacological interventions, dietary supplements or alternative medicines; and health-economic analyses were excluded.

Results/conclusions

The present literature analysis showed that SLE has a considerable impact on the HRQoL of patients and their ability to carry out normal daily activities, resulting in a high prevalence of disability. The HRQoL of patients with SLE is consistently lower than that of matched healthy control subjects or patients with other chronic diseases. Predictors of poor HRQoL in patients with SLE include older age, fatigue and the presence of co-morbid neurological or psychiatric disorders, particularly depression or anxiety. Conversely, clinical measures of disease activity and organ damage are poor indicators of patients' HRQoL. Even though current evidence gives an insight into the HRQoL in patients with SLE, there are still many areas where results need to be confirmed or clarified and therefore there is the need to conduct further studies including trials with HRQoL as a primary objective.

Section snippets

Methodology

A search of all publications relating to the burden of SLE (January 2000 to March 2010) was performed using the Medline (PubMed) database. The following search terms were used to identify potentially relevant publications: SLE plus QoL, patient perspective, patient burden of illness/disease, family impact/burden, prognosis, self, employment/work impact, psychological impact, patient(s) and psychological impact/physical impact/daily living or functionality/fatigue/functioning and impact on

Assessment of HRQoL in patients with SLE

Twenty-four studies that evaluated HRQoL in patients with SLE used Short Form 36-Item Health Survey (SF-36) [2], [3], [4], [5], [6], [7], [8], [9], *[10], [11], [12], *[13], *[14], [15], [16], [17], [18], [19], [20], [21], *[22], [23], [24], *[25], [26], [27], [28], [29], *[30], [31]. Other generic instruments, such as the EuroQoL utility index (EuroQoL-5D), EuroQoL visual analogue scale (EuroQoL VAS) and shortened QoL instruments derived from SF-36 (SF-8, SF-6D and SF-12), were occasionally

Impact of SLE on working life

The grade of participation is finally the result that reflects best the influence of a disease on daily life and satisfaction. An essential part of participation is given by working life on which SLE can have a major impact.

Data from 12 studies revealed that employment rates in individuals with SLE (mean age at time of study: 38–50 years; mean age at diagnosis: 31–40 years) ranged from 26% to 54% [2], [5], [7], [9], [32], [40], [42], [46], [48], [49], [61], [62], [63] while the proportion of

Comparisons with other chronic conditions

Several studies have explored the burden of SLE in relation to that imposed by other chronic diseases.

The results of a large comparative study conducted in the USA showed that patients with SLE (n = 1316) generally had worse HRQoL than patients with RA (n = 13,722) or non-inflammatory rheumatic disease (n = 3623), but better HRQoL than patients with fibromyalgia (n = 2733) [24]. Although patients with SLE had mean SF-36 PCS (36.3, 36.7 and 36.4, respectively) and EuroQoL-5D (0.72, 0.73 and

Conclusions

The present literature analysis demonstrated that SLE has a considerable impact on the HRQoL of patients and their ability to carry out normal daily activities, resulting in a high prevalence of disability (25–57%). Multiple studies show that the HRQoL of patients with SLE is consistently lower than that of matched healthy control subjects or the population norm, with all aspects of HRQoL (including physical and mental health, vitality, pain and social and emotional functioning) affected by the

Acknowledgements

Dr. Heike Carnarius, Senior Medical Advisor at GSK, participated in the conception, analysis and interpretation of the literature search.

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