Evaluating the Impact of Thoracic Oncologists’ Tolerance of Uncertainty on Prognostic Discussions
This study assessed the prevalence of intolerance of prognostic uncertainty among thoracic oncologists using a cross-sectional survey of physicians treating patients with advanced lung cancers. We also evaluated the potential association of intolerance for uncertainty among thoracic oncologists with prognostic communication practices.
Developing a Disease-Specific Measure for Quality of Life in Patients with the Myelodysplastic Syndrome In an effort to expand and improve the tools available for outcomes research in hematologic oncology, this study developed a new disease-specific measure of quality of life for patients with myelodysplastic syndromes (MDS). This measure, known as the Quality of Life in Myelodysplasia Scale (QUALMS), was developed and later validated and has rapidly been incorporated into several MDS registries in the U.S., Canada, and Europe and translated into 26 languages. Learn more or request the QUALMS here.
A New Paradigm of Transfusion Decision Support for Patients with MDS: Peri-Transfusion Quality of Life Assessments (PTQA)
This multi-center pilot study determined how to tailor blood transfusion decisions to the quality of life (QOL) changes experienced by individual patients with MDS. A peri-transfusion QOL assessment (PTQA) was piloted using the QUALMS, an MDS-specific questionnaire developed in the Abel Lab, to determine whether QOL improves after transfusion and whether PTQA can inform future transfusion decisions.
The Myelodysplasia Transplantation-Associated Outcomes (MDS-TAO) Study
The objective of this study was to prospectively examine post- hematopoietic stem cell transplant (HSCT) outcomes in patients aged 60 to 75 with MDS to determine whether these outcomes are similar to those patients with MDS aged 60 to 75 who do not undergo HSCT, but who both have disease severe enough as well as a health status good enough they would also be eligible for HSCT.
Study to Understand Data Sharing Perspectives of Patients (SUDS-P)
The goal of this study was to better understand the perspectives of Dana-Farber’s patient population regarding the Institute’s data-sharing practices using a large cross-sectional survey. The study aimed to gain insight into patient perspectives to better inform Dana-Farber’s current and future data-sharing practices and data collaborations.
Modeling Techniques to Address Scarcity in Cancer Care
This set of studies seeks to bridge data science and normative medical ethics by evaluating the process and outcomes associated with scarce resource allocation in cancer care. An initial study developed and validated a discrete-event simulation model of a chemotherapy shortage to evaluate how the use of different, ethically-acceptable allocation strategies impacted drug distribution and patient outcomes. Ongoing projects seek to generalize these methods and assess the downstream effects of allocation on care equity.