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

Pettersson, S., Lövgren, M., Eriksson, L. E. , Moberg, C., Svenungsson, E., Gunnarsson, I. & Henriksson, E. (2012). An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life. Scandinavian Journal of Rheumatology, 41(5), pp. 383-390. doi: 10.3109/03009742.2012.677857


Objective: The aim of this study was to explore the most distressing symptoms of systemic lupus erythematosus (SLE) and determine how these relate to health-related quality of life (HRQoL), anxiety/depression, patient demographics and disease characteristics (duration, activity, organ damage).

Methods: In a cross-sectional study, patients with SLE (n=324, age 18-84 years) gave written responses regarding which SLE-related symptoms they experienced as most difficult. Their responses were categorized. Within each category, patients reporting a specific symptom were compared with non-reporters and analyzed for patient demographics, disease duration, results from the questionnaires: Medical Outcomes Study Short-Form 36, Hospital Anxiety and Depression Scale, Systemic Lupus Activity Measure, SLE disease activity index and the Systemic Lupus International Collaboration Clinics/American College of Rheumatology damage index.

Results: 23 symptom categories were identified. Fatigue (51%), Pain (50%) and Musculoskeletal distress (46%) were most frequently reported. Compared with non-reporters, only patients reporting Fatigue showed statistically significant impact on both mental and physical components of HRQoL.. Patients with no present symptoms (10%) had higher HRQoL (p<0.001) and lower levels of depression (p<0.001), anxiety (p<0.01) and disease activity (SLAM) (p<0.001).

Conclusion: Fatigue, pain or musculoskeletal distress dominated the reported symptoms in approximately half of the patients. Only patients reporting Fatigue scored lower on both mental and physical aspects of HRQoL. Our results emphasize the need for further support and interventions to ease the symptom load and improve HRQoL in patients with SLE. Our findings further indicate that this need is particularly urgent for patients with symptoms of pain or fatigue.

Publication Type: Article
Publisher Keywords: Lupus Erythematosus, Systemic, patient perspective, symptom, pain, fatigue, health related quality of life.
Subjects: R Medicine > RC Internal medicine
Departments: School of Health & Psychological Sciences > Nursing
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