A Cross-National Survey of People Living with Hemophilia: Impact on Daily Living and Patient Education in Central Europe

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.

Diagnostic and treatment methods of skeletal symptoms of haemophilia and education of patients regarding the disease – review study

“…More than half of the respondents was satisfied with the care received. Similar results were obtained in cross-national survey covering Central Europe [16]. Over 70% of patients with haemophilia or their caregivers were satisfied with their level of knowledge about the disease.…”

Health Related Quality of Life and Psychopathological Symptoms in People With Hemophilia, Bloodborne Co-Infections and Comorbidities: An Italian Multicenter Observational Study

“… 30 Moreover, it has highlighted the role of behavioral precautions, the uncertainty of actions, and the fear of unexpected bleeding on depression, frustration, isolation, and embarrassment. 31 Other studies confirmed some aspects related to comorbidities (arthropathy, HCV/HBV/HIV co-infections, liver cirrhosis due to HBV/HCV infections, and coexisting heart and kidney diseases, for example) are ongoing challenges that block the accepting health status in these persons. 32 , 33 As experienced in our sample, the correlation between the perceived quality of life and the adopted lifestyle further corroborates this point.…”

Percepción Sensorial De Una Muestra De Gamers Del Distrito Metropolitano De Quito Por Plataformas Digitales

“…Se empleó cuestionarios auto administrados en línea mediante la herramienta Typeform, que ha manifestado fiabilidad apta para ser utilizada en estudios transnacionales europeos durante el levantamiento de información (Banchev et al, 2021). Se incluyó escalas Likert de autoinforme, que son una parte esencial de la psicología moderna para evaluar los aspectos psicométricos que comprenden este estudio (Jebb et al, 2021).…”