Background: Despite dramatic increases in survival over the last decade, research shows that symptom burden, functional status, and quality of life (QoL) outcomes for individuals diagnosed with multiple myeloma (i.e., myeloma) are near the worst among all cancer patients. With improved treatments, median survival is now greater than 10 years for some subsets of myeloma patients. There is a limited understanding of how longer-term survival coupled with continued disease and treatment side effects affect myeloma patients. The purpose of this project is to address critical gaps in knowledge by describing symptom prevalence, severity, and clusters, functional status, and overall QoL among a cohort of myeloma patients. Methods: In this cross-sectional study, 400 myeloma patients diagnosed in or after the year 2000 will be identified through the Duke Cancer Institute Tumor Registry. Potential participants will be contacted through postal mailings and email and asked to complete self-report survey on personal and disease characteristics, symptom burden, functional status, and QoL. Additional diagnosis and treatment variables will be abstracted from the electronic health record. The first study aim is to characterize symptom burden, functional status, and QoL in this cohort. This will involve summarizing outcomes and identifying symptom clusters and will provide unique insights into the experiences of myeloma patients.
The second aim i s to identify personal and disease characteristics associated with symptom burden, functional status, and QoL. Understanding these associations will help to identify patients who may be at risk for poor outcomes and lead to future intervention development. Mr. LeBlanc and his Sponsors have identified four training goals that will facilitate the successful completion of the proposed work and prepare him for a career as a nurse scientist. These goals are to: 1) advance knowledge of symptom science theory, research design, and analysis; 2) acquire skills and knowledge related to the use of patient-reported outcomes measures in research and clinical settings; 3) build skills and knowledge to successfully conduct cohort studies; and, 4) expand knowledge of the myeloma patient population. His training plan takes advantage of resources available at Duke University, such as the Duke Cancer Institute, Department of Population Health Sciences, and Social Sciences Research Institute. Additionally, Mr. LeBlanc has assembled a team of health scientists who have the expertise to meet his training goals through one on one mentoring and independent studies. This fellowship would afford Mr. LeBlanc training in symptom science and patient reported outcomes, while assembling one of the first cohorts of myeloma patients based in the US. Once established, this cohort presents opportunities for further exploration and longitudinal follow-up to help launch Mr. LeBlanc?s career as an independent nurse scientist.
This cross-sectional observational study could improve our understanding of the symptom burden, functional status, and quality of life among multiple myeloma patients and inform development of interventions to improve care. Knowledge gained about this understudied population could be applied in other oncology populations and lead to improved outcomes across cancer diagnoses.
