Real World Patient Reported Outcomes Evaluating the Impact of Hematologic Malignancies on Patient Quality of Life

Background/Purpose: Patient reported outcomes (PRO) research is mostly published as part of a clinical trial's secondary outcomes in hematologic malignancies. Comparison of the impact of patient PROs has not been thoroughly studied across various hematologic malignancies. We sought to evaluate how patients living with leukemia, lymphoma or myeloma describe the impact of their diagnosis on their lives including social (work, relationships) and its toll on mental health in the real-world setting.

Method: In September 2020, an email invitation to an online survey was sent to US members of MyHealthTeam (MHT) hematologic malignancies networks. MHT is a social network platform that connects people with similar diagnoses and provides support and information to patients across various conditions. We used data from 3 hematologic malignancies social networks, MyLeukemiaTeam, MyLymphomaTeam and MyMyelomaTeam, that have a combined 39,000 members living with one of the aforementioned blood cancers. In total, 461 members completed a pre-designed 26-question survey inquiring about patient's experiences with the diagnosis of a hematologic malignancy and its impact on everyday life. Quality of life (physical, emotional, and social aspects) were assessed and compared across the different hematologic malignancies. T-Tests were performed to determine any significant differences in PRO across the groups.

Results: Of the 461 patients who completed the survey, 22% were diagnosed with leukemia (Leuk), 31% diagnosed with lymphoma (Lymph) and the majority 47% diagnosed with multiple myeloma (MM). The majority of respondents were either in remission (42%) or early stage/slow growing tumor (20%) and 22% were diagnosed within a year of taking the survey.

The far-reaching impact on quality of life was evident in challenges to the physical and emotional aspects of daily living. Physically, most patients reported that they found it hard to exercise (63%, 57% and 71% for leuk, lymph, and MM, respectively, p=NS), hard to perform everyday chores (60%, 59%, 67%, p=NS) and hard to get around (50%, 46%, 52%, p= NS). The majority of patients felt that the hematologic malignancy interferes with their social life (59%, 55%, 58%, p=NS), makes it hard to spend time outside the home (57%, 48%, 51%, p=NS) and makes it hard to be sexually active (44%, 47%, 49% p=NS). No significant differences were noted across the various hematologic malignancies with regards to physical or social impact.

The emotional toll of living with a form of blood cancer manifested in feeling stressed (64%, 72%, 66%), anxious or depressed (65%, 69%, 60%), and feeling isolated/alone (53%, 48%, 47%) for leuk, lymph and MM respectively. There were no significant differences in responses by blood cancer type. The emotional toll had a more acute impact on newly diagnosed patients, regardless of cancer type. Seventy nine percent of newly diagnosed patients experienced stress versus 64% who had been living with cancer for over one year (p=.001). The sum total impact is the high number indicating that blood cancer interferes with quality of life overall (72% regardless of blood cancer type).

Primary oncologists were by far the most critical source of information in learning about treatments and about how to manage their hematologic malignancy (75%, 80%, 80% for leukemia, lymphoma, and MM respectively). The vast majority of patients felt they could have meaningful conversations with their oncologists (85%, 84%, 87%). Table 1.Conclusions: Understanding the physical, emotional, and quality of life impact of hematologic malignancies can help providers improve patient care and provide a more tailored holistic approach to managing hematologic malignancies. Interestingly, patients with leukemia, lymphoma or multiple myeloma had very similar reported outcomes irrespective of the primary hematology malignancy. Experiencing stress was most pronounced during the first year of therapy. Organic conversations happening on the MyHealthTeam blood cancer social networks emphasize the challenges of living with blood cancer, especially for newly diagnosed patients and those with more aggressive malignancies. The use of these data may help modify the way we approach these diagnoses in a multidisciplinary approach.

Madanat:Sierra Oncology, Stemline Therapeutics and Novartis: Membership on an entity's Board of Directors or advisory committees; BluePrint Medicines, GERON, OncLiv: Consultancy, Honoraria. Glassner:My Health Team: Current Employment. Schneider:MyHealthTeam: Current Employment.