Addressing Discordant Perceptions and Beliefs between Patients with Hemophilia and Their Care Teams: Results from a Pilot Program to Build Skills in Shared Decision-Making

Background Evidence-based guidelines for hemophilia management support shared decision-making (SDM) as a method for personalizing treatment decisions and achieving hemophilia control. Using a validated collaborative learning model (Sapir 2017), we evaluated patient and healthcare provider (HCP) perceptions regarding SDM and hemophilia treatment. Methods From April to June 2020, 161 patients and caregivers of patients with hemophilia and 66 HCPs participated in 1 of 6 live, virtual collaborative learning sessions developed with the National Hemophilia Foundation (Table 1). Before and after the sessions, patients and their providers completed tethered surveys to assess alignments and discordances in preferences, experiences, and concerns around hemophilia treatment and SDM. Results Patients and HCPs differed in their estimates of how often providers engage their patients in components of SDM (Figure 1; all comparisons P < 0.01). Relative to patients’ responses, HCPs were more likely to report that they usually or always: ask how hemophilia is affecting the patient’s quality of life (50% vs 71%), ask about the patient’s goals for treatment (48% vs 67%), explain their goals for hemophilia treatment (48% vs 67%), describe different treatment options (46% vs 67%), explain the pros/cons of each treatment option (45% vs 71%), and work with the patient to create a treatment plan that fits the patient’s needs and goals (52% vs 74%). When asked why patients are not more involved in treatment decisions, HCPs were more likely than patients to select the following reasons: patients trust the care team to make decisions on their behalf (42% HCPs, 26% patients), patients lack knowledge about hemophilia and available therapies (30% HCPs, 15% patients), and patients feel too overwhelmed to make decisions (27% HCPs, 5% patients). Conversely, HCPs were less likely to report that patients are already fully involved in treatment decisions (15% HCPs, 46% patients). In addition, 10% of patients reported that they are not more involved in treatment decisions because their care team never asks about their treatment goals and priorities. Patients and HCPs held discordant beliefs about the degree of patients' progress toward treatment goals. While HCPs estimated that 79% of their patients are on track to meet their goals, only 49% of patients described themselves similarly; instead, 51% reported that they are only somewhat on track, not on track, or unsure about their degree of progr