Data illustrate
patients’ challenges
with hemophilia
See what patients said about their experiences.
Garrett has severe
hemophilia A.
Data illustrate
patients’ challenges
with hemophilia
See what patients said about their experiences.
Survey results show existing burden in patients with hemophilia A and B1
A real-world, observational survey shows that despite many existing therapeutic options, people with hemophilia continue to experience burdens managing their disease. The survey was conducted from March 30, 2022 to April 15, 2023 and included a total of 472 patients in the US who had hemophilia A or hemophilia B, both with and without inhibitors, and were currently on treatment. Findings from the survey, below, describe patients’ experiences.
Patients had anxiety and worry about bleed protection1
Patients had anxiety and worry about bleed protection1
of patients reported feeling anxious that their current treatment did not provide adequate bleed protection at least sometimes (N=113)a
of patients reported feeling worried that their current prophylactic treatment did not provide adequate bleed protection at least sometimes (N=101)a
N=the number of respondents that answered sometimes/somewhat or higher to each question.
aPatients were asked: “How often do you feel anxious that your current treatment might not be adequately protecting you from bleeding?” and “How often do you feel worried that your prophylaxis treatment does not adequately protect you from bleeding?” Response options were “Never,” “Rarely,” “Sometimes,” “Often,” and “Always.”
Patients experienced various administration difficulties1,b
were at least somewhat bothered by the need to carry medication when they're out (N=84)
found it at least somewhat difficult to put the needle correctly in their body (N=35)
found it least somewhat difficult to find a good place on their body to inject (N=53)
bPatients responded to questions from the Hemophilia Treatment Experience Measure (Hemo-TEM) questionnaire on a 5-point scale: not at all/never, a little/rarely, somewhat/sometimes, very/often, or extremely/always.
of patients reported that they postponed, delayed, or missed a treatment on purpose at least sometimes (N=87)1
of patients reported that they postponed, delayed, or missed a treatment on purpose at least sometimes (N=87)1
Garrett has severe
hemophilia A.
Garrett has severe
hemophilia A.
Garrett has severe
hemophilia A.
Some patients felt bothered
Some patients said they were at least somewhat bothered by1,b:
29%
needing to carry medication and supplies while they’re out (N=84)
24%
having to find time in their schedule for treatment (N=72)
25%
how often they need to give themselves treatment (N=75)
19%
how long it takes to prepare and give treatment (N=57)
25%
needing to store medication and supplies (N=73)
20%
the number of steps it takes to give treatment (N=61)
Most common physical administration burdens of patients with hemophilia
Patients with hemophilia reported that at least sometimes, they experienced scarring, bruising, and other physical issues.1,b
Most common mental and emotional burdens of patients with hemophilia
Patients said that at least sometimes, they experienced stress, frustration, anxiety, or worry.1,b
Most common mental and emotional burdens of patients with hemophilia
Patients said that at least sometimes, they experienced stress, frustration, anxiety, or worry.1,b
Disruption to patients’ daily lives
Disruption to patients’ daily lives
Some patients indicated that their lives were disrupted at least somewhat with regard to these day-to-day activities.1,b
Some patients indicated that their lives were disrupted at least somewhat with regard to these day-to-day activities.1,b
Patients still experienced bleeds1,c
hemophilia A without inhibitors
2.3
bleeds per year
(N=308)
hemophilia A with inhibitors
1.8
bleeds per year
(N=23)
hemophilia B without inhibitors
2.6
bleeds per year
(N=95)
hemophilia B with inhibitors
4.9
bleeds per year
(N=7)
cMean annual bleed rates (ABRs) were calculated from Electronic Medical Records (EMRs) of the broader population (N=472) for generalizability.
Garrett has severe
hemophilia A.
Learn about investigational approaches to coagulation and administration.
Garrett has severe
hemophilia A.
The objective of this real-world, observational survey was to assess the nature of treatment burden and annualized bleed rates (ABR) for people with hemophilia A and B in the United States. From March 30th 2022 to April 15th 2023, 472 patients with hemophilia responded to a survey that captured concerns around protection from bleeding episodes. Additional cross-sectional data on treatment burden were collected via a validated questionnaire (Hemophilia Treatment Experience Measure [Hemo-TEM]) by PicnicHealth. PicnicHealth collects and extracts medical records on behalf of patients and invites them to participate in recurring outcome surveys. Patients were recruited to the PicnicHealth research platform using digital marketing, direct referrals, and community and affiliate partnerships.
Characteristics of patients
All patients (N=472)
Patients who responded to at least 1 survey (N=320)
Sex
91% male
9% female
90% male
10% female
Mean age
31 years
31 years
Race
78% White
15% Black
3% Asian
3% Other/More than one
15% Unknown
80% White
13% Black
3% Asian
4% Other/More than one
8% Unknown
Ethnicity
19% Hispanic or Latino
81% Not Hispanic or Latino
23% Unknown
19% Hispanic or Latino
81% Not Hispanic or Latino
8% Unknown
Hemophilia status
71% HAwoI
4% HAwI
24% HBwoI
1% HBwI
72% HAwoI
5% HAwI
22% HBwoI
0% HBwI
All patients (N=465)
Patients who responded to at least 1 survey (N=320)
Sex
91% male
9% female
90% male
10% female
Mean age
31 years
31 years
Race
65% White
13% Black
2% Asian
0.6% American Indian or Alaskan Native
0.4% Native Hawaiian or Other Pacific Islander
2% Multi-racial
17% Unknown
80% White
13% Black
3% Asian
4% Other/More than one
8% Unknown
Ethnicity
14% Hispanic or Latino
60% Not Hispanic or Latino
26% Unknown
19% Hispanic or Latino
81% Not Hispanic or Latino
8% Unknown
Hemophilia status
72% HAwoI
4% HAwI
22% HBwoI
1.5% HBwI
72% HAwoI
5% HAwI
22% HBwoI
0% HBwI
HAwI=hemophilia A with inhibitors; HAwoI=hemophilia A without inhibitors; HBwI=hemophilia B with inhibitors; HBwoI=hemophilia B without inhibitors.
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Reference:
- Data on file. Novo Nordisk Inc; Plainsboro, NJ. Data Source: PicnicHealth.
