New research co-authored by RTI-HS researchers and published in Patient helps bring greater understanding of patient perspectives in hematologic cancers, particularly acute myeloid leukemia. The researchers analyzed information from a targeted literature review alongside patient-reported information shared on YouTube. They found the topics of greatest interest to patients included: surviving in order to achieve personal goals or reach milestones, emotional and psychological distress caused by the diagnosis, and uncertainties surrounding their prognosis and life expectancy. While patients were very interested in information about therapies that had the potential to delay the progression of the disease and extend their lives, they weighed the possible impacts on their quality of life and disruption of their regular routines. Concerns about the lack of treatment options, the possibility of side effects, and the effect their diagnosis and treatment might have on their relationships and their day-to-day activities were commonly expressed.
The combined insights from these two data sources provide an improved understanding of the patient experience and perceptions of hematologic cancers and treatments. These insights could be used to inform patient-centered drug development strategies as well as support discussions between clinicians, patients, and their caregivers when making treatment decisions.
Read the article:
Crawford R, Sully K, Conroy R, Johnson C, Doward L, Bell T, Welch V, Peloquin F, Gater A. Patient-centered insights on treatment decision making and living with acute myeloid leukemia and other hematologic cancers. Patient. 2019 Aug 28.