Project Term
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Dana-Farber Cancer Institute
Boston, MA
United States
Project Summary
We aim to determine if rigorous assessment of quality of life (QOL) can help with treatment decisions for hairy cell leukemia (HCL). We will first analyze a robust HCL patient database to understand QOL trajectories among patients before they need initial treatment or relapse, as well as among specific subgroups such as those who are younger (75), and those who or working. We will then then utilize a patient-driven consensus process to determine which QOL instruments most accurately reflect experiences when facing treatment or re-treatment. Finally, we will engage 30 HCL patients nearing treatment or re-treatment, measure QOL, and provide results for discussion with providers, measuring feasibility and preliminary impact of this approach.
Lay Abstract
Consensus guidelines have been a boon for clinical decision making for patients with hairy cell leukemia (HCL). On the other hand, little is known about how patient-reported outcomes or quality of life (QOL) may help with these decisions. Leveraging recent data from the Hairy Cell Leukemia Patient Data Registry—which has periodically assessed several validated QOL measures for over 600 patients—we propose to determine whether rigorous assessment of QOL can help with HCL treatment decisions. We will assess QOL trajectories for the overall cohort and then model several patient subsets, including those who started treatment or relapsed, younger (75) patients, and those who are employed. The goal of these analyses will be to produce, for the first time, long-term epidemiologic data on the natural history of HCL QOL and to inform our later two aims. We will then engage 12 HCL patients in a formal consensus process we have successfully utilized in a prior study characterizing most appropriate QOL measures for patients undergoing stem transplantation. Through several rounds of iterative discussion, feedback, and ranking, we will determine which combination of registry QOL instruments most accurately reflect patient experiences when they are nearing treatment. Next, we will work with the registry to determine how HCL patients collectively fare on these instruments and design a patient-vetted sample QOL report, so that patients can see their results in the context of their patient peer results and their own prior results. Finally, we will engage a cohort of 30 HCL patients expected to be treated within the next six months, periodically measure their QOL through a web-based application, and provide their results in reports to both patients and providers for discussion in the clinic. We will measure feasibility and acceptability of this approach, as well as preliminary efficacy, which will be defined as the proportion of patients who report that their QOL report was used to help with treatment decisions during the study period. The goal will be to provide preliminary data regarding feasibility and impact of this approach that can be used to help patients to better engage with providers when treatment decisions are made.
The Hairy Cell Leukemia Foundation (HCLF) and Blood Cancer United have joined forces to create the Hairy Cell Leukemia Research Initiative program to support targeted research to build a more comprehensive foundational understanding of the molecular basis of hairy cell leukemia (HCL), develop additional therapies, and optimize outcomes for patients with this disease.
Program