Abstract
Introduction: Patients with aggressive non-Hodgkin lymphoma (NHL) experience high physical and psychological burden related to their disease and intensive treatment regimens especially with advances in treatment options for relapsed/refractory disease. Palliative care focuses on improving quality of life and controlling symptoms for patients with serious illness at any point during their disease trajectory. Data regarding the patterns of palliative care provision and utilization among patients with aggressive NHL is lacking.
Methods: A retrospective cohort study was conducted using population-based health care data in Ontario, Canada. Patients aged 18 years or over who were diagnosed with diffuse large B-cell lymphoma (DLBCL) or transformed follicular lymphoma (tFL) and died between January 2007 and December 2023 were included. We abstracted patient and clinical characteristics and information on the patterns of palliative care services including the timing and setting of palliative encounters and types of services delivered.
Results: The cohort included 7270 decedents; 6998 (96.2%) had DLBCL and 272 (3.74%) had tFL. The median age at death was 76 years (IQR 67-83). The mean survival from time of diagnosis to death was 3.38 years. Among 3660 patients with known cancer stage, 2443 (66.7%) presented with stage III or IV disease. 4553 patients (62.2%) had lived for 12 months or longer after their lymphoma diagnosis. Of the 7270 patients who died, 2301 (32%) received palliative care within the last 3 months of life. Over half of these patients (1208/2301; 52.5%) received palliative care within the last month of life. 27% of the entire cohort did not receive any palliative care service prior to death. Of the patients who received palliative care late (within 3 months of death), their first palliative care encounter occurred a median of 55 days before death (IQR 41-72) and largely through community-based palliative services (777/1093; 71%) either via outpatient physician visit or palliative home care services. The remainder 29% of patients received their first palliative care encounter in an institutional setting, most commonly an inpatient hospital admission. Of those who received palliative care early (> 3 months before death), their first palliative care encounter occurred a median of 268 days before death (IQR 159-510) and largely in a community setting (2531/2997; 84.5%).
Conclusions: Our study demonstrates that palliative care is initiated very late in the disease trajectory for the majority of patients diagnosed with aggressive NHL, and a significant proportion of patients do not receive any specialty palliative care prior to death. The majority of patients receive their first palliative care encounter in the community as opposed to institutional settings. This suggests an opportunity for close collaboration between hematologists and primary palliative care teams to ensure timely and integrative palliative care for patients with aggressive lymphoma.
