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

Abstract

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 analysed for patient demographics, disease duration, and results from the following questionnaires: the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), the Systemic Lupus Activity Measure (SLAM), the SLE Disease Activity Index (SLEDAI), and the Systemic Lupus International Collaboration Clinics/American College of Rheumatology (SLICC/ACR) damage index.

Results: Twenty-three 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 a 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.

Acknowledgements

We thank Professor C Tishelman for valuable expert advice and discussions, coordinating nurse S Möller for her excellent competence in sharing the work of collecting data, and all patients contributing with their time and experience of SLE.

This work was supported by the Swedish Rheumatism Association, the King Gustaf V 80th Birthday Fund, the Swedish Heart–Lung Foundation, the Swedish Society of Medicine, the Åke Wiberg Foundation, Alex and Eva Wallströms Foundation, the Foundation in memory of Clas Groschinsky, Karolinska Institutet’s Foundations, and funding through the regional agreement on medical training and clinical research (ALF) between Stockholm County Council and Karolinska Institutet.