Physical Activity Awareness and Understanding of Treatment Protection Among People With Haemophilia and Their Caregivers in Central Europe
Identifikátory výsledku
Kód výsledku v IS VaVaI
<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00064203%3A_____%2F25%3A10497392" target="_blank" >RIV/00064203:_____/25:10497392 - isvavai.cz</a>
Nalezeny alternativní kódy
RIV/00216208:11130/25:10497392
Výsledek na webu
<a href="https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=lyE-MrubZV" target="_blank" >https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=lyE-MrubZV</a>
DOI - Digital Object Identifier
<a href="http://dx.doi.org/10.1111/hae.70038" target="_blank" >10.1111/hae.70038</a>
Alternativní jazyky
Jazyk výsledku
angličtina
Název v původním jazyce
Physical Activity Awareness and Understanding of Treatment Protection Among People With Haemophilia and Their Caregivers in Central Europe
Popis výsledku v původním jazyce
BACKGROUND: Physical activity is now considered generally beneficial for persons with haemophilia (PWH). However, the specific type and extent of activity and its impact on quality of life (QoL) and bleed protection during exercise is under-researched. This knowledge gap should significantly impact PWH's ability to manage their condition optimally. OBJECTIVE: To explore levels of physical activity and understand bleed protection during exercise among PWH as part of the Liberate Life project. METHODS: A web-based survey was conducted across eight European countries between August and September 2023. The online survey was developed by haemophilia treatment experts and patient association representatives according to the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) method. The 24-question survey, distributed to PWH or their parents/caregivers, covered topics such as demographics, the impact of haemophilia on daily life, bleed protection understanding and involvement in physical activities. An activity index was used to categorize PWH as 'more' or 'less' active. RESULTS: Of 374 respondents analysed, PWH engagement in physical activities, mainly low-impact activities like walking, swimming or cycling, was high (90.9%). Most respondents (74.9%) were 'less active' according to the activity index. There was a significant knowledge gap in respondents' understanding of bleed protection provided by factor and non-factor therapies. Joint health (68.7%), disease severity (69.3%) and capability for physical activity (62.3%) were indicated as key variables influencing PWH QoL. CONCLUSION: These findings underscore the need for educational programs to improve PWH's understanding of protective factor levels and the role of non-factor therapies in managing haemophilia.
Název v anglickém jazyce
Physical Activity Awareness and Understanding of Treatment Protection Among People With Haemophilia and Their Caregivers in Central Europe
Popis výsledku anglicky
BACKGROUND: Physical activity is now considered generally beneficial for persons with haemophilia (PWH). However, the specific type and extent of activity and its impact on quality of life (QoL) and bleed protection during exercise is under-researched. This knowledge gap should significantly impact PWH's ability to manage their condition optimally. OBJECTIVE: To explore levels of physical activity and understand bleed protection during exercise among PWH as part of the Liberate Life project. METHODS: A web-based survey was conducted across eight European countries between August and September 2023. The online survey was developed by haemophilia treatment experts and patient association representatives according to the Checklist for Reporting Results of Internet E-Surveys (CHERRIES) method. The 24-question survey, distributed to PWH or their parents/caregivers, covered topics such as demographics, the impact of haemophilia on daily life, bleed protection understanding and involvement in physical activities. An activity index was used to categorize PWH as 'more' or 'less' active. RESULTS: Of 374 respondents analysed, PWH engagement in physical activities, mainly low-impact activities like walking, swimming or cycling, was high (90.9%). Most respondents (74.9%) were 'less active' according to the activity index. There was a significant knowledge gap in respondents' understanding of bleed protection provided by factor and non-factor therapies. Joint health (68.7%), disease severity (69.3%) and capability for physical activity (62.3%) were indicated as key variables influencing PWH QoL. CONCLUSION: These findings underscore the need for educational programs to improve PWH's understanding of protective factor levels and the role of non-factor therapies in managing haemophilia.
Klasifikace
Druh
J<sub>imp</sub> - Článek v periodiku v databázi Web of Science
CEP obor
—
OECD FORD obor
30205 - Hematology
Návaznosti výsledku
Projekt
—
Návaznosti
I - Institucionalni podpora na dlouhodoby koncepcni rozvoj vyzkumne organizace
Ostatní
Rok uplatnění
2025
Kód důvěrnosti údajů
S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů
Údaje specifické pro druh výsledku
Název periodika
Haemophilia
ISSN
1351-8216
e-ISSN
1365-2516
Svazek periodika
31
Číslo periodika v rámci svazku
5
Stát vydavatele periodika
GB - Spojené království Velké Británie a Severního Irska
Počet stran výsledku
10
Strana od-do
893-902
Kód UT WoS článku
001473293600001
EID výsledku v databázi Scopus
2-s2.0-105003822020