Introduction: Despite the well-established benefits of early palliative care (EPC) integration in patients with advanced solid tumors or hematologic malignancies (HM), its application in hematologic malignancies remains limited and poorly standardized. In particular, the fundamental elements of the intervention responsible for such benefits have barely been described in HM and real-word practice, possibly contributing to a limited use of this model of care. This study aimed to define the key components of an early palliative care intervention in a real-world outpatient setting for patients with acute myeloid leukemia (AML) and high-risk myelodysplastic syndrome (HR-MDS) and to explore associations between visit content, quality indicators of palliative care delivery and markers of end-of-life (EOL) care aggressiveness. Material and Methods: We conducted a retrospective, single-center study on 180 patients with AML or HR-MDS who received EPC integration with standard hematologic treatment between January 2013 and December 2024. Content analysis was applied to 1175 outpatient visits using a predefined coding framework derived from existing EPC models in oncology. Seven domains were examined: relationship and rapport building, addressing symptoms, addressing coping, establishing illness understanding, discussing cancer treatments, EOL planning and, finally, engaging family members. Associations between visit domains and quality indicators of EOL care were assessed through univariate analyses. Results: Addressing symptoms [sample visits= 1175, n= 925 (90%)] and coping [sample visits= 1175, n= 877 (75%)] were the most frequent topics throughout the EPC trajectory. Relationship and rapport building [sample visits= 1175, n= 613 (52%)], illness understanding [sample visits= 1175, n= 837 (71%)] and discussing cancer treatments [sample visits= 1175, n= 674 (57%)] were more common early on, while EOL planning [sample visits= 1175, n= 315 (27%)] increased significantly toward the final visits. Engaging family members [sample visits= 1175, n= 611 (52%)] was present in over half of the visits. Almost all patients (98.3%) received at least one quality indicator; 10% received all five. Higher frequencies of visits focused on illness understanding, engaging family members and EOL planning were associated with improved care quality, while higher frequencies of visits addressing symptoms, coping, EOL planning and the presence of at least one quality indicator of EOL care inversely correlated with aggressive EOL interventions, like late chemotherapy and in-hospital death. Conclusions: In conclusion, the content of EPC visits evolves over time in response to changing patient needs. A more structured and comprehensive EPC pathway is associated with improved medical care and EOL quality in patients with AML, MDS/AML and MDS-HR. These findings support the integration of EPC into standard care for this population. However, broader implementation remains complex and requires further prospective, controlled studies to better define the optimal timing and components of EPC delivery.
Defining the Elements of Early Palliative Care Integration Intervention in Patients with Acute Myeloid Leukemia and High-Risk Myelodysplastic Syndrome
DI LORENZO, GIULIA
2024/2025
Abstract
Introduction: Despite the well-established benefits of early palliative care (EPC) integration in patients with advanced solid tumors or hematologic malignancies (HM), its application in hematologic malignancies remains limited and poorly standardized. In particular, the fundamental elements of the intervention responsible for such benefits have barely been described in HM and real-word practice, possibly contributing to a limited use of this model of care. This study aimed to define the key components of an early palliative care intervention in a real-world outpatient setting for patients with acute myeloid leukemia (AML) and high-risk myelodysplastic syndrome (HR-MDS) and to explore associations between visit content, quality indicators of palliative care delivery and markers of end-of-life (EOL) care aggressiveness. Material and Methods: We conducted a retrospective, single-center study on 180 patients with AML or HR-MDS who received EPC integration with standard hematologic treatment between January 2013 and December 2024. Content analysis was applied to 1175 outpatient visits using a predefined coding framework derived from existing EPC models in oncology. Seven domains were examined: relationship and rapport building, addressing symptoms, addressing coping, establishing illness understanding, discussing cancer treatments, EOL planning and, finally, engaging family members. Associations between visit domains and quality indicators of EOL care were assessed through univariate analyses. Results: Addressing symptoms [sample visits= 1175, n= 925 (90%)] and coping [sample visits= 1175, n= 877 (75%)] were the most frequent topics throughout the EPC trajectory. Relationship and rapport building [sample visits= 1175, n= 613 (52%)], illness understanding [sample visits= 1175, n= 837 (71%)] and discussing cancer treatments [sample visits= 1175, n= 674 (57%)] were more common early on, while EOL planning [sample visits= 1175, n= 315 (27%)] increased significantly toward the final visits. Engaging family members [sample visits= 1175, n= 611 (52%)] was present in over half of the visits. Almost all patients (98.3%) received at least one quality indicator; 10% received all five. Higher frequencies of visits focused on illness understanding, engaging family members and EOL planning were associated with improved care quality, while higher frequencies of visits addressing symptoms, coping, EOL planning and the presence of at least one quality indicator of EOL care inversely correlated with aggressive EOL interventions, like late chemotherapy and in-hospital death. Conclusions: In conclusion, the content of EPC visits evolves over time in response to changing patient needs. A more structured and comprehensive EPC pathway is associated with improved medical care and EOL quality in patients with AML, MDS/AML and MDS-HR. These findings support the integration of EPC into standard care for this population. However, broader implementation remains complex and requires further prospective, controlled studies to better define the optimal timing and components of EPC delivery.| File | Dimensione | Formato | |
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https://hdl.handle.net/20.500.14251/3273