Background/Purpose: Patients with rheumatic diseases may have systemic complications from disease as well as therapy and often suffer symptoms towards the end-of-life comparable to patients with advanced cancer. Palliative care in this group of patients has not been well evaluated due to a lack of data in the current literature. The aims of this study were to: (i) describe the multidimensional symptom profile and prevalence and (ii) analyze the factors associated with symptom prevalence and referral to palliative care services in patients with systemic rheumatic diseases in the last 1 year of life.

Methods:   The electronic records of patients with systemic rheumatic diseases who died at the National University Hospital, Singapore from 2012 to 2016 were reviewed. Patients with crystal arthritis, septic arthritis, osteoarthritis and fibromyalgia were excluded. Symptom prevalence was assessed by summation of the number of symptoms experienced by the patients in the last 1 year of life. Charlson Comorbidity Index (CCI) and its predicted 1-year survival were constructed from the medical records. Linear and logistic regressions were used to identify independent predictors for symptom prevalence and referral to palliative care services.

Results:   In total, 70 deceased patients with systemic rheumatic diseases were identified. The mean age at death was 66.2 years (standard deviation 14.5), 52 (74.3%) were females. The majority of patients had rheumatoid arthritis (30.0%) and systemic lupus erythematosus (25.7%), 58.6% of the deceased patients had active disease. The most common cause of death was infection (45.7%). Table 1 summarizes the symptom profile and prevalence of the deceased patients. Only 5.7% had advance care planning and 15.7% were referred to palliative care services. Active rheumatic disease was associated with escalation of immunosuppression (p < 0.001) but not with recurrent infections or symptom prevalence (p > 0.05, respectively). Among the various symptoms examined, only depression was associated with referral to palliative care services (p = 0.013). Predicted 1-year survival (β = -0.104, SE = 0.027, p < 0.001) was independently associated with symptom prevalence. When considering only patients with active rheumatic diseases, predicted 1-year survival (β = -0.089, SE = 0.030, p = 0.005) and recurrent infections (β = 1.866, SE = 0.749, p = 0.017) were independently related to symptom prevalence. Predicted 1-year survival (OR = 0.902, 95% CI 0.825-0.986, p = 0.023), but not symptom prevalence (p > 0.05), was independently associated with referral to palliative care services.

Conclusion:   This is the first study to describe the symptom profile and prevalence in patients with systemic rheumatic diseases in their last 1 year of life. Predicted 1-year survival using the CCI may be used to identify patients in earlier need of palliative care.

« Back to 2016 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/high-symptom-prevalence-and-under-utilisation-of-palliative-care-at-end-of-life-of-patients-with-systemic-rheumatic-diseases/