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Presentation Details
| Hemophilia Life Stages and Changes Global Survey of People with Hemophilia, Caregivers, and Hematologists: Data from United States and Canadian Respondents Mark W.Skinner1, 2, Kim Isenberg3, Pamela Wilton4, Andrew Wilson5, Lynn Malec6, Kyrie Smith-Jones5. 1Institute for Policy Advancement, Ltd, Washington, DC, USA.2Assistant Clinical Professor, McMaster University, Hamilton, ON, Canada.3Sanofi, Minneapolis, MN, USA.4Canadian Hemophilia Society, Montreal, QC, Canada.5Sanofi, Cambridge, MA, USA.6Versiti Blood Research Institute Associate Professor, Division of Hematology and Oncology, Departments of Medicine and Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA |
Abstract
Background: The Hemophilia Life Stages and Changes Global Survey was designed to better understand the impact of living with hemophilia from the perspectives of people with hemophilia (PWH), caregivers of PWH, and hematologists treating PWH. Overall, respondents were 950 PWH, 1080 caregivers, and 679 hematologists from 11 countries across 4 continents.
Objectives: Data for the overall cohort have been previously presented. Here, we present data for respondents from Canada and the United States (US).
Methods: Fifteen-minute online surveys comprised of closed-ended questions were conducted between February 27–April 10, 2023, by The Harris Poll on behalf of Sanofi. PWH and caregiver respondents were aged ≥18 years, and hematologists who treated ≥5 PWH per month. Sampling precision was measured using a Bayesian credible interval. Raw data were not weighted to adjust for geodemographics except to provide each country with an equal share of voice; thus, data are representative only of individuals completing the survey.
Results: The survey was completed by 70 PWH, 100 caregivers, and 20 hematologists from Canada and 180 PHW, 90 caregivers, and 100 hematologists from the US. Responses from Canadian PWH indicated that 41%, 47%, and 11% respectively, had mild, moderate, and severe hemophilia. By comparison, more US PWH had severe disease (mild, 14%; moderate, 18%; severe, 67%). Caregivers in both regions were most commonly spouses/parents (Canada, 50%/31%; US, 36%/16%), but overwhelmingly, 49% of US PWH said they did not have a caregiver. Most PWH/caregivers reported that PWH received care through a hemophilia treatment center (HTC; Canada, 96%/91%; US, 84%/96%). Most hematologists (Canada, 80%; US, 70%) also provided care in HTCs. The proportion of PWH treated primarily by a hematologist was 56% for Canadian PWH and 91% for US PWH. Canadian PWH reported on average 12 visits with healthcare professionals (HCPs) within the past year, while US PWH had significantly fewer (3) visits. Satisfaction of PWH/caregivers on communication with HCPs was high for both regions (Canadian, 94%/95%; US, 89%/98%), as was satisfaction of hematologists on communication with patients (Canada, 95%; US, 91%). A large proportion of Canadian PWH, caregivers, and hematologists (71%/81%/75%) agreed that PWH often tell HCPs they are fine when they are experiencing symptoms; while, US hematologists were aligned to these sentiments (73%), fewer US PWH (36%) and caregivers (40%) agreed with this. The most important aspects of living with hemophilia for PWH were similar for PWH from both regions, but caregivers’ opinions differed slightly according to region (Figure 1). Top worries of PWH, according to PWH, caregivers, and hematologists also differed slightly across the two regions (Figure 2).
Conclusions Data from respondents from Canada and the US revealed that the impact of hemophilia on daily life of PWH is substantial. More PWH from the US than Canada had severe disease, yet they had substantially fewer HCP visits in the year prior to the survey. Further research is required to understand the reasons for this. Additionally, fewer US than Canadian PWH had a caregiver and fewer reported masking how they were feeling to HCPs.
Funding: Sanofi.
No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author.
Objectives: Data for the overall cohort have been previously presented. Here, we present data for respondents from Canada and the United States (US).
Methods: Fifteen-minute online surveys comprised of closed-ended questions were conducted between February 27–April 10, 2023, by The Harris Poll on behalf of Sanofi. PWH and caregiver respondents were aged ≥18 years, and hematologists who treated ≥5 PWH per month. Sampling precision was measured using a Bayesian credible interval. Raw data were not weighted to adjust for geodemographics except to provide each country with an equal share of voice; thus, data are representative only of individuals completing the survey.
Results: The survey was completed by 70 PWH, 100 caregivers, and 20 hematologists from Canada and 180 PHW, 90 caregivers, and 100 hematologists from the US. Responses from Canadian PWH indicated that 41%, 47%, and 11% respectively, had mild, moderate, and severe hemophilia. By comparison, more US PWH had severe disease (mild, 14%; moderate, 18%; severe, 67%). Caregivers in both regions were most commonly spouses/parents (Canada, 50%/31%; US, 36%/16%), but overwhelmingly, 49% of US PWH said they did not have a caregiver. Most PWH/caregivers reported that PWH received care through a hemophilia treatment center (HTC; Canada, 96%/91%; US, 84%/96%). Most hematologists (Canada, 80%; US, 70%) also provided care in HTCs. The proportion of PWH treated primarily by a hematologist was 56% for Canadian PWH and 91% for US PWH. Canadian PWH reported on average 12 visits with healthcare professionals (HCPs) within the past year, while US PWH had significantly fewer (3) visits. Satisfaction of PWH/caregivers on communication with HCPs was high for both regions (Canadian, 94%/95%; US, 89%/98%), as was satisfaction of hematologists on communication with patients (Canada, 95%; US, 91%). A large proportion of Canadian PWH, caregivers, and hematologists (71%/81%/75%) agreed that PWH often tell HCPs they are fine when they are experiencing symptoms; while, US hematologists were aligned to these sentiments (73%), fewer US PWH (36%) and caregivers (40%) agreed with this. The most important aspects of living with hemophilia for PWH were similar for PWH from both regions, but caregivers’ opinions differed slightly according to region (Figure 1). Top worries of PWH, according to PWH, caregivers, and hematologists also differed slightly across the two regions (Figure 2).
Conclusions Data from respondents from Canada and the US revealed that the impact of hemophilia on daily life of PWH is substantial. More PWH from the US than Canada had severe disease, yet they had substantially fewer HCP visits in the year prior to the survey. Further research is required to understand the reasons for this. Additionally, fewer US than Canadian PWH had a caregiver and fewer reported masking how they were feeling to HCPs.
Funding: Sanofi.
No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author.