https://orcid.org/0000-0001-6148-3737
Abstract
Background
Information about the impact of hemophilia on daily living and information preferences for patients and their caregivers in Central Europe has been limited.
Methods
This cross-national survey was conducted between April 1 and October 15, 2020 and utilized a self-administered questionnaire to collect data (Typeform™) from people living with hemophilia in Bulgaria, Croatia, Czech Republic, Hungary, Slovakia and Slovenia. The questionnaire included 22 questions regarding difficulties in daily life and preferences for receiving hemophilia-related information. Respondents were stratified into two main groups, people with hemophilia (PwH) or their caregivers (CPwH). Results were analyzed using descriptive statistics.
Results
Of the 364 respondents, 232 were PwH (63.7%) and 132 were CPwH (36.3%). In total, 70.3% of hemophilia patients/caregivers responded that they are kept sufficiently informed about life with hemophilia, with 68.0%, 59.1% and 56.3% of respondents obtaining information from their physicians, patient associations and via digital media (internet and social media), respectively. However, 97.8% of respondents expressed an interest in additional information, particularly new hemophilia treatment options (62.1%), which in contrast to other topics was indicated most frequently by both patients and caregivers in all six countries. Most frequent difficulties in everyday life with hemophilia were identified as mobility problems (41.8%), unexpected bleeding (38.5%), pain (35.4%), and uncertainty with what they can or cannot do (25.0%). During the 2020 COVID-19 pandemic, 52.5% of respondents reported that they did not experience any major change in daily living with hemophilia.
Conclusion
Based on our Central European survey, hemophilia mostly affects peoples’ lives by causing mobility difficulties, unexpected bleeding, pain and uncertainty in daily activities. Although the majority of respondents reported being educated about hemophilia, most PwH and CPwH respondents sought additional information, highlighting the need for continuous personalized patient education to cope with present challenges.
Graphical abstract
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Acknowledgments
The authors thank the participants of the study.
The authors thank the Patient Advocacy Group: Uros Brezavscek, Nikolay Conev, Martin Zidek, Peter Nagy, Bogdan Necoara, Ivan Paclik and Martin Sedmina.
Editorial Assistance: Medical writing and editorial assistance in the preparation of this manuscript was provided by Klara Belzar, PhD, XLR8-Health, Hertfordshire, UK. Financial support for this assistance was provided by Swedish Orphan Biovitrum s.r.o., Czech Republic in compliance with international guidelines for good publication practice.
Statistical Assistance: Data analysis support was provided by Robert Antl from Seesame s.r.o., Slovakia. Financial support for this assistance was funded by Swedish Orphan Biovitrum s.r.o., Czech Republic.
Author Contributions
All authors made substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; took part in revising the article critically for important intellectual content; agreed to submit to the current journal; gave final approval of the version to be published; and agree to be accountable for all aspects of the work.
Disclosure
ABan received honoraria for consultancy from Bayer and Sobi, and honoraria for lecturing from Bayer, NovoNordisk, Sobi and Takeda. ABat reports advisory board and speaker fees from Sobi during the conduct of the study, and advisory board fees for Roche, outside the submitted work. ABat also received honoraria for consultancy and/or speakers fees and/or research funding from Grifols, Novo Nordisk, Octapharma, Pfizer, Sobi and Takeda. BFK received honoraria for consultancy from Sobi. CK received honoraria for consultancy from Sobi. GP is a current employee of Sobi, Switzerland. EZ received honoraria for consultancy and speaking from Novo Nordisk, Roche, Sobi and Takeda, and received travel grants from Pfizer, Roche, Sobi and Takeda. SZS received honoraria for speaking from Novo Nordisk, Octapharma, Pfizer, Roche, Sobi and Takeda. The authors reported no other potential conflicts of interest for this work.