Advances in Hematologic Malignancies
Issue 11, Fall 2019
— Oreofe Odejide, MD, MPH
Although there have been substantial improvements in the accuracy of diagnostic testing and effectiveness of therapies for patients with lymphoma, an area that has lagged behind is the quality of supportive care patients receive, especially in the latter phases of their disease. One established model of supportive care that has been shown to improve quality of life (QOL) for patients with an estimated life expectancy of six months or less is enrollment in a hospice program.
Despite this, our analysis of 18,777 lymphoma patients enrolled in the National Cancer Institute's Surveillance Epidemiology and End Results (SEER)-Medicare dataset showed low rates of hospice use (Odejide et al, JNCI 2016). Of this population, 41% enrolled in hospice, substantially lower than the national average for most cancer subtypes; many enrolled 3 days or fewer before death, not enough time to gain the full benefit of hospice-based care. These findings suggest that patients with lymphoma are not benefiting from the complete spectrum of supportive care services.
Our subsequent work demonstrated that a barrier to supportive care for patients with lymphoma may be the inadequacy of available services. In a series of focus groups with hematologic oncologists, participants reported that the limited ability of hospices to provide palliative transfusions was a barrier to hospice referral. In our ensuing national survey of 349 hematologic oncologists, although the majority reported that hospice care is helpful, 46% of respondents felt that available services were inadequate for the needs of patients with hematologic malignancies, including lymphoma (Odejide et al, Cancer 2017).
Our overarching goal is to develop supportive care services that are well-tailored to the needs of patients with lymphoma to improve their QOL. A crucial step toward this goal is characterizing patients’ perspectives regarding their supportive care needs and the value they assign to various supportive care services. To this end, we recently conducted a series of focus groups of patients with lymphoma and their family caregivers to delineate the most important self-identified factors contributing to their quality of life and supportive services that they consider helpful. Among several services that participants identified as important for their QOL, such as visiting nurses and transfusion support, a resonating theme was also the desire for peer support from other patients.
Building on these results, we have now developed a "Services for Quality of Life" survey, which we will administer to a large cohort of patients with lymphoma and other hematologic malignancies to quantify the utility they place on various supportive services. We will combine the results with data from hematologic oncologists and family caregivers (Figure) to develop and test the impact of innovative supportive care interventions on the QOL of lymphoma patients.
Figure. Developing a Supportive Care Intervention to Improve QOL for Patients with Lymphoma
Perspectives about utility of supportive services