Abstract
Systemic lupus erythematosus is an incurable, chronic illness that typically strikes at an age when patients are in school or establishing themselves within their professions. Lupus can subsequently have an enormous impact, resulting in patients having to make difficult life and work decisions. Although increased disease activity and permanent organ damage can affect a patient’s mood, activities of daily living, and relationships, it is often the subjective symptoms reported by lupus patients that most affect their quality of life. Several important reasons for work disability and absenteeism are fatigue, joint pain, and cognitive impairment, as well as depression and anxiety. Often these issues are not measured in the disease activity tools used by investigators and clinicians to monitor a patient’s disease. As a result, treatment will often not address these issues, and patients often report feeling frustrated and alone because they find little empathy from those that cannot objectively appreciate their symptoms. The direct costs of lupus are staggering because this is a multisystemic disease that requires aggressive management to prevent permanent organ damage. However, the indirect costs from disability are often greater, making lupus one of the most expensive long-term conditions. Because of high costs and disability rates, marginalized populations that are adversely affected by the social determinants of health often face even worse outcomes. In this chapter we summarize these issues and discuss potential interventions that can limit patient disability and address the structural vulnerability faced by lupus patients.
Original language | English (US) |
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Title of host publication | Dubois' Lupus Erythematosus and Related Syndromes |
Publisher | Elsevier |
Pages | 853-863 |
Number of pages | 11 |
ISBN (Electronic) | 9780323932325 |
DOIs | |
State | Published - Jan 1 2024 |
Keywords
- Direct costs
- Disability
- Health Disparities
- Indirect costs
- Mental Impairment
- Physical Impairment
- Social support
ASJC Scopus subject areas
- General Medicine