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2471 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

Program: Oral and Poster Abstracts
Session: 901. Health Services Research—Non-Malignant Conditions: Poster II
Hematology Disease Topics & Pathways:
Hemophilia, Diseases, Bleeding and Clotting, Genetic Disorders, Quality Improvement
Sunday, December 6, 2020, 7:00 AM-3:30 PM

Amanda B. Blair, MD1, Kate Nammacher, MPH2*, Anne Jacobson, MS3*, Jeffrey D Carter, PhD3* and Tamar Sapir, PhD3*

1Seattle Children's Hospital, Seattle, WA
2National Hemophilia Foundation, New York, NY
3PRIME Education, LLC, Ft Lauderdale, FL


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.


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.


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 progress. Notably, during the past year, 49% of patients treated 2 or more bleeds at home and 22% had 2 or more bleeds treated at an ER.

Regarding switching hemophilia treatments, HCPs overestimated patients’ concerns about whether a new plan will work for the patient’s type of hemophilia (39% HCPs, 25% patients) and fear of side effects (30% HCPs, 22% patients). By comparison, providers correctly estimated patients’ low degree of concern about adapting to a new treatment schedule (9% HCPs, 11% patients) and knowing how to treat a bleed (9% HCPs, 7% patients), but underestimated patients’ concern about affording different treatment (3% HCPs, 8% patients). In total, providers underestimated how many patients would not worry about switching treatment (8% HCPs, 19% patients).

Following the collaborative learning sessions, patients set goals to talk to their care team about their treatment goals (45%), consider their treatment options more closely (40%), take a more active role in treatment decision-making (38%), and notify their care team with concerns about their treatment (31%). HCPs made commitments to engage their patients more frequently in SDM (52%), increase the variety of educational materials they provide to patients (52%), educate their patients about wellness strategies and self-care (33%), and conduct additional small-group education sessions with their patients (30%).


Patients with hemophilia and their HCPs differed in their experiences, perceptions, and beliefs related to SDM and other key aspects of patient-centered care. Collaborative education can support improved knowledge, communication, and understanding between patients and providers, leading to greater engagement in SDM around personalized hemophilia care.

Study Sponsor Statement

The study reported in this abstract was funded by an independent educational grant from Genentech. The grantor had no role in the study design, execution, analysis, or reporting.

Disclosures: No relevant conflicts of interest to declare.

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