Patient Experience Research and Palliative Care Integration in Malignant Hematology
Thomas LeBlancMD, MA, MHS, FAAHPM
Project Term: July 1, 2022 - June 30, 2027
My research aims to improve the patient and caregiver experience of blood cancer care. To achieve this, I conduct trials of integrated palliative care interventions. Palliative care improves patient and caregiver outcomes for those with solid tumors, but less is known about its role in hematology. My research aims to design and implement integrated palliative care interventions in blood cancer settings, to improve the patient and caregiver experience of illness, regardless of treatment outcome.
Palliative care is specialized medical care for people with serious illness, but is often not made available to patients with blood cancers. Palliative care provides an extra layer of support for patients and families, leading to improvements in symptom burden, quality of life, psychological and spiritual distress, illness understanding, coping, and end-of-life outcomes. Evidence from several randomized clinical trials shows that integrating palliative care into routine cancer care can dramatically improve the patient experience for those with advanced solid tumors. However, patients with blood cancers have been excluded from most palliative care research. Despite this, patients with blood cancers have many palliative care needs, and these often go unmet. To address these needs, I co-led the first-ever multisite, randomized clinical trial of integrated palliative care in hematology. We enrolled 160 patients with acute myeloid leukemia (AML) who were hospitalized to receive high-dose therapy. Those who were randomized to the palliative care intervention had better quality of life, less anxiety and depression, and less post-traumatic stress, with sustained improvements at 6 months. These results suggest that integrated palliative care should be a new standard of care for patients with AML hospitalized to receive high-dose chemotherapy. Today, however, many more patients with AML are being treated with low-intensity chemotherapy regimens, often in combination with new targeted therapies, and frequently in outpatient settings. Outpatient palliative care integration has not yet been studied in hematology. Similarly, other more common hematologic malignancies have not even been examined in palliative care integration trials, including non-hodgkin lymphomas and multiple myeloma. There is much more work to do in these areas, and my research aims to close this evidence gap by systematically conducting high quality clinical studies and interventional trials of palliative care integration in hematology. As one of the only dual-trained hematologic malignancy and palliative care specialists in the U.S., I am uniquely positioned to conduct this work. Given the remarkable benefits of integrated palliative care for patients with AML, ongoing investment in this research is likely to pay of significantly in improving the lives of many other patients and families facing a blood cancer diagnosis.