Background/Purpose: Lupus nephritis (LN) is one of the most serious manifestations of systemic lupus erythematosus (SLE) associated with considerable morbidity that has a devastating impact on a patient’s life. Little is known about true impact of LN on health-related quality of life (HRQoL) in patients with SLE. The objective of our study was to review and summarize evidence on the humanistic burden of LN in adult and juvenile patients.

Methods: A targeted literature review was conducted in MEDLINE/Pubmed and Embase to identify studies in adult and juvenile patients with diagnosed LN. A search strategy was developed separately for the two databases to identify relevant peer-reviewed articles published in English between March 2012 and March 2022, and conference abstracts indexed in Embase since 2019. All records were screened by a single reviewer according to pre-specified inclusion and exclusion criteria.

Results: Of 4,126 records identified in the medical databases, 10 non-interventional studies evaluated HRQoL in adult (n=9) and juvenile (n=1) SLE patients with LN. Six studies included patients from the US. The remaining studies were conducted in multiple countries worldwide including US (n=2), Latin America (n=1) and Switzerland (n=1). Additional interventional studies evaluating treatment effect on patient HRQoL were identified and analyses are ongoing. Adults with active LN reported poor scores in almost all domains of the SF-36 suggesting a deterioration in multiple aspects of life, such as physical and emotional functioning. The patient-perceived burden of active LN was more pronounced than other SLE organ system manifestations. Furthermore, active LN significantly impacted HRQoL measured by lupus-specific questionnaires including LupusPRO and LupusQoL, compared to inactive LN patients or non-LN SLE patients. The greatest impact of LN was demonstrated on procreation, physical, and emotional functioning. Three studies examined the perspectives of LN patients on facilitators of decision-making and satisfaction of disease control and treatment. Dissatisfaction was reported by one third of nephrology physicians and 25% of patients and was associated with LN severity and various signs and symptoms of disease. Patients with LN indicated that restoring health, improved quality of life, and effective patient-physician communication regarding benefits and harms as the most relevant aspects of treatment. Children with LN on glucocorticoid therapy had reduced attention and worse problem internalization as reported by their parents using the Behavior Assessment of Childhood Disorders (BASC-2).

Conclusion: SLE patients with LN suffer from poor HRQoL across multiple domains of life, including physical and emotional health, especially during periods of active renal disease. One in four patients with LN are dissatisfied with their disease control, indicating a high unmet need for effective therapies and room for LN management improvement.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/poor-health-related-quality-of-life-in-patients-with-lupus-nephritis/