End-of-life experience of patients with rare cancers and their caregivers.

Abstract

9540 Background: Cancers are defined as rare if fewer than 35,000 cases are diagnosed per year. Rare cancers represented 23% of incident cancer cases and 33% of cancer deaths in 2008. However, little is known about the end-of-life (EOL) experience of patients with rare cancers or their caregivers. Methods: From September 2002 to August 2008, 618 advanced cancer patients (195 with rare and 423 with common stage IV cancers following failure of first line chemotherapy) and their caregivers participated in a U.S. multi-site, prospective, interview-based cohort study (Coping with Cancer). Patients were interviewed about EOL preferences, planning, and care at study entry. Interviews with caregivers at baseline assessed caregiver mental and physical health, while post-mortem surveys assessed EOL patient care. Descriptive statistics (t-test, chi-square) were used to characterize the study sample; logistic regression tested the association between cancer type and care received, controlling for confounders. Results: Rare cancer participants were more likely to be younger (57.7 vs 60.7 years, p=.01), Hispanic (19% vs 9%, p=.002) and have fewer co-morbidities (Charlson comorbidity index, mean 5.9 vs 6.5, p=.004), than their common-cancer counterparts. Rare cancers patients were four times more likely to be receiving both radiation and chemotherapy at study entry than common cancer patients (10.3% versus 3.3%, OR 4.31, p=0.003), but equally as likely to acknowledge their illness was terminal, have EOL discussions, and participate in advance care planning as common cancer patients. Caregivers of patients with rare cancers were more likely than common cancer caregivers to report declining health during the prior year of care-giving (22.1% versus 15.7%, p=0.05) and marginally more likely to prefer the patient choose treatment focusing on extending life rather than pain relief (22.3% vs 16.5%, p=0.08). Conclusions: Patients with advanced-stage, rare cancers may be treated more aggressively following failure of first line chemotherapy than individuals with common cancers. Future research should investigate patterns and quality of care for terminally ill patients with rare cancers and caregiver burden.