IDENTIFY BARRIERS
for more effective shared decision-making in hemophilia A1,2
Nikola lives with Hemophilia A
THE TRUTH IS...
Not all physicians were completely satisfied with current prophylaxis1
In real-world study with 62 physicians,
40%
AND
53%
Reported not being completely satisfied with FVIII Mimetic and EHL Prophylaxis, respectively1,a, due tob
Are trade-offs being made with current prophylaxis?
aPhysicians responded on a 5-point scale: Completely dissatisfied, Dissatisfied, Neither satisfied nor dissatisfied, Satisfied, or Completely satisfied. The number of physicians who reported being "satisfied" with current treatment is unknown.
bPercentages reflect the number of physican-reported patient data for the top reason for not being completely satisfied with treatment.
Questions asked: "Please indicate your overall satisfaction with the current treatment in terms of how well it manages the patient’s hemophilia" and "Why are you not completely satisfied with the patient's current prophylactic treatment".
The study is limited to patients seeking hemophilia care, with potential bias toward those with severe illness or higher healthcare interaction. Additionally, the cross-sectional design limits tracking changes over time1
The objective of this study was to use the Adelphi Real World (ARW) hemophilia Disease Specific Programme (DSP)™ to gain insights into the real-world characteristics and unmet needs of patients with hemophilia A and B within the current treatment landscape in the United States. From July 2023 to February 2024, 62 physicians who treat and manage patients with hemophilia were identified by ARW through local fieldwork partners. Both the recruited physicians and their patients subsequently completed the survey, which included data from 423 patients (348 with hemophilia A and 75 with hemophilia B). The comprehensive observational survey utilized online physician surveys and self-completion questionnaires for patients and caregivers, employing validated instruments such as EQ-5D-5L, WPAI, Haemo-QoL, and joint health assessment tools (eg, FISH, HJHS).
Breakthrough bleeds and administration challenges have consequences
Giving up on any activity or interference with activities is a profound compromise patients could be making with current prophylaxis.
Key questions to ask your patients
- Do you feel confident that your regimen can fit into your lifestyle? Why or why not?
- Are you concerned or are your patients concerned with high-volume doses with an every-4-week regimen or vein health due to frequent infusions?
- Is bleed protection a concern for you with the current dosing schedule?
- What information will you need to feel more confident about a less frequent dosing schedule?
Lack of patient confidence in treatment outcomes may act as a barrier when it comes to shared decision-making.
CAN DEEPER CONVERSATIONS HELP UNCOVER TRADE-OFFS?
Fostering in-depth discussions with your patients may help uncover physical or emotional burdens.3
Some QUESTIONS TO REVEAL UNSPOKEN COMPROMISES
FVIII MIMETIC
How would you describe your level of confidence around bleed protection with less frequent dosing?
What administration challenges have you experienced, if any?
What factors do you consider when thinking about your preferred dosing interval (ie: every 4-week dosing)?
How does the time it takes to prepare and inject treatment impact you?
FVIII PROPHYLAXIS
What is your level of confidence around bleed protection with SHL or EHL prophylaxis?
How concerned are you with venous access due to frequent infusions?
What role does infusion frequency play in your decisions to start, continue, or stop treatment?
How does the time it takes to prepare and inject treatment impact you?
BRING THEIR TRUTH
TO LIGHT
Consider patient trade-offs when addressing hemophilia A management
IDENTIFY UNEXPRESSED PATIENT GOALS3
Explore what is working and not working with their current management approach to inform future decisions3
Luke lives with Hemophilia A
References
- Data on file. Novo Nordisk Inc; Plainsboro, NJ.
- Srivastava A, Santagostino E, Dougall A, et al. WFH Guidelines for the Management of Hemophilia, 3rd edition [published correction appears in Haemophilia. 2021;27(4):699]. Haemophilia. 2020;26(suppl 6):1-158.
- WFH Shared Decision Making Tool: The Role of the Healthcare Team. World Federation of Hemophilia. Last reviewed: August 2024. Accessed September 8, 2024. https://www1.wfh.org/publications/files/pdf-2371.pdf
