Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China

INTRODUCTION: Haemophilia is a hereditary, chronic and haemorrhagic disorder caused by a deficiency in coagulation factors. Long-term spontaneous bleeding of joints and soft tissues can seriously affect the quality of life of patients. OBJECTIVE: The study aimed to assess the health-related quality...

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Autores principales: Niu, Jinyu, Ning, Liangwen, Zhang, Qiao, Liu, Ze, Ma, Yi, Xu, Xiaoxue, Wu, Qunhong, Hao, Yanhua, Cui, Yu, Liu, Chaojie
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8808448/
https://www.ncbi.nlm.nih.gov/pubmed/35105597
http://dx.doi.org/10.1136/bmjopen-2021-056668
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author Niu, Jinyu
Ning, Liangwen
Zhang, Qiao
Liu, Ze
Ma, Yi
Xu, Xiaoxue
Wu, Qunhong
Hao, Yanhua
Cui, Yu
Liu, Chaojie
author_facet Niu, Jinyu
Ning, Liangwen
Zhang, Qiao
Liu, Ze
Ma, Yi
Xu, Xiaoxue
Wu, Qunhong
Hao, Yanhua
Cui, Yu
Liu, Chaojie
author_sort Niu, Jinyu
collection PubMed
description INTRODUCTION: Haemophilia is a hereditary, chronic and haemorrhagic disorder caused by a deficiency in coagulation factors. Long-term spontaneous bleeding of joints and soft tissues can seriously affect the quality of life of patients. OBJECTIVE: The study aimed to assess the health-related quality of life (HRQoL) of patients with haemophilia and associated factors. METHODS: A snowball sampling strategy was adopted to select study participants. Eligible participants were those who were 18 years or older and had mild, moderate or severe haemophilia. They were asked to self-complete a questionnaire, collecting data regarding their sociodemographic characteristics, target joint status and HRQoL measured by the EQ-5D-5L(a tool developed by the European quality of life (EuroQol) Group). RESULTS: The respondents reported a mean EQ-5D(utility)(country-specific valuesets for the EQ-5D-5L) score of 0.51 (SD=0.34). Those with severe haemophilia had a lower utility score than those with mild/moderate haemophilia (0.46±0.37 vs 0.56±0.30, p=0.737). The linear regression analyses showed that older age (>25 years), two or more target joints, not working, low levels of knowledge of the disease and borrowing money to pay for medical treatments were associated with lower EQ-5D(utility) scores. CONCLUSION: Low HRQoL of patients with haemophilia is evident in China. Social support needs to be strengthened to address this issue.
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spelling pubmed-88084482022-02-09 Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China Niu, Jinyu Ning, Liangwen Zhang, Qiao Liu, Ze Ma, Yi Xu, Xiaoxue Wu, Qunhong Hao, Yanhua Cui, Yu Liu, Chaojie BMJ Open Haematology (Incl Blood Transfusion) INTRODUCTION: Haemophilia is a hereditary, chronic and haemorrhagic disorder caused by a deficiency in coagulation factors. Long-term spontaneous bleeding of joints and soft tissues can seriously affect the quality of life of patients. OBJECTIVE: The study aimed to assess the health-related quality of life (HRQoL) of patients with haemophilia and associated factors. METHODS: A snowball sampling strategy was adopted to select study participants. Eligible participants were those who were 18 years or older and had mild, moderate or severe haemophilia. They were asked to self-complete a questionnaire, collecting data regarding their sociodemographic characteristics, target joint status and HRQoL measured by the EQ-5D-5L(a tool developed by the European quality of life (EuroQol) Group). RESULTS: The respondents reported a mean EQ-5D(utility)(country-specific valuesets for the EQ-5D-5L) score of 0.51 (SD=0.34). Those with severe haemophilia had a lower utility score than those with mild/moderate haemophilia (0.46±0.37 vs 0.56±0.30, p=0.737). The linear regression analyses showed that older age (>25 years), two or more target joints, not working, low levels of knowledge of the disease and borrowing money to pay for medical treatments were associated with lower EQ-5D(utility) scores. CONCLUSION: Low HRQoL of patients with haemophilia is evident in China. Social support needs to be strengthened to address this issue. BMJ Publishing Group 2022-02-01 /pmc/articles/PMC8808448/ /pubmed/35105597 http://dx.doi.org/10.1136/bmjopen-2021-056668 Text en © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Haematology (Incl Blood Transfusion)
Niu, Jinyu
Ning, Liangwen
Zhang, Qiao
Liu, Ze
Ma, Yi
Xu, Xiaoxue
Wu, Qunhong
Hao, Yanhua
Cui, Yu
Liu, Chaojie
Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China
title Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China
title_full Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China
title_fullStr Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China
title_full_unstemmed Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China
title_short Health-related quality of life of patients with haemophilia: a cross-sectional survey in the Northeast of China
title_sort health-related quality of life of patients with haemophilia: a cross-sectional survey in the northeast of china
topic Haematology (Incl Blood Transfusion)
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8808448/
https://www.ncbi.nlm.nih.gov/pubmed/35105597
http://dx.doi.org/10.1136/bmjopen-2021-056668
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