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Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study

BACKGROUND: Health-related quality of life (HRQoL) has been brought up for decades in haemophilia patients. However, no data to date are available about HRQoL in children with haemophilia using long-term follow up data. This nearly 4-year follow-up study aimed to assess the long-term HRQoL of haemop...

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Autores principales: Zhang, Heng, Huang, Jie, Kong, Xiaoyan, Ma, Gaoxiang, Fang, Yongjun
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6366014/
https://www.ncbi.nlm.nih.gov/pubmed/30728017
http://dx.doi.org/10.1186/s12955-019-1083-3
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author Zhang, Heng
Huang, Jie
Kong, Xiaoyan
Ma, Gaoxiang
Fang, Yongjun
author_facet Zhang, Heng
Huang, Jie
Kong, Xiaoyan
Ma, Gaoxiang
Fang, Yongjun
author_sort Zhang, Heng
collection PubMed
description BACKGROUND: Health-related quality of life (HRQoL) has been brought up for decades in haemophilia patients. However, no data to date are available about HRQoL in children with haemophilia using long-term follow up data. This nearly 4-year follow-up study aimed to assess the long-term HRQoL of haemophilia children. METHODS: A prospective cohort study among 42 children with haemophilia and their parents was conducted in August 2014 in a children’s hospital; follow-up was completed in January 2018. Primary endpoint was the change in patient HRQoL evaluated by Canadian Haemophilia Outcomes–Kids’ Life Assessment Tool (CHO-KLAT) from baseline to year 4; secondary endpoint was the impact of bleeding rates, physical activity restriction, financial burden and treatment (prophylaxis vs on-demand treatment) on HRQoL, as well as the impact of treatment on event-free survival. RESULTS: Totally 42 patients (mean age, 5.48[SD, 4.63] years) and 42 parents were included. 38 families completed 4-year follow up. Patients reported a small increase in HRQoL from baseline to year 4. The mean scores of child self-report and parent proxy report of CHO-KLAT at baseline were 60.69 (SD = 20.28) and 61.01 (SD = 12.14), respectively. Scores at follow-up were 64.69 (SD = 13.71) and 65.33 (SD = 15.78), respectively. Haemophilia patients without physical activity restriction, living in urban areas, and receiving prophylactic treatment and home injection, had higher average values for HRQoL scores than the others. Bleeding rates were proportionally negatively correlated with HRQoL. Patients who had received prophylactic treatment had better event-free survival. CONCLUSIONS: Haemophilia decreased HRQoL of patients, but this effect weakened after 4 years. HRQoL of children is influenced by severity of haemophilia, bleeding rates, physical activity restriction, financial burden and treatment. Prophylactic treatment is a key factor contributing to event-free survivor prognosis and the optimal form of therapy for childhood haemophilia.
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spelling pubmed-63660142019-02-15 Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study Zhang, Heng Huang, Jie Kong, Xiaoyan Ma, Gaoxiang Fang, Yongjun Health Qual Life Outcomes Research BACKGROUND: Health-related quality of life (HRQoL) has been brought up for decades in haemophilia patients. However, no data to date are available about HRQoL in children with haemophilia using long-term follow up data. This nearly 4-year follow-up study aimed to assess the long-term HRQoL of haemophilia children. METHODS: A prospective cohort study among 42 children with haemophilia and their parents was conducted in August 2014 in a children’s hospital; follow-up was completed in January 2018. Primary endpoint was the change in patient HRQoL evaluated by Canadian Haemophilia Outcomes–Kids’ Life Assessment Tool (CHO-KLAT) from baseline to year 4; secondary endpoint was the impact of bleeding rates, physical activity restriction, financial burden and treatment (prophylaxis vs on-demand treatment) on HRQoL, as well as the impact of treatment on event-free survival. RESULTS: Totally 42 patients (mean age, 5.48[SD, 4.63] years) and 42 parents were included. 38 families completed 4-year follow up. Patients reported a small increase in HRQoL from baseline to year 4. The mean scores of child self-report and parent proxy report of CHO-KLAT at baseline were 60.69 (SD = 20.28) and 61.01 (SD = 12.14), respectively. Scores at follow-up were 64.69 (SD = 13.71) and 65.33 (SD = 15.78), respectively. Haemophilia patients without physical activity restriction, living in urban areas, and receiving prophylactic treatment and home injection, had higher average values for HRQoL scores than the others. Bleeding rates were proportionally negatively correlated with HRQoL. Patients who had received prophylactic treatment had better event-free survival. CONCLUSIONS: Haemophilia decreased HRQoL of patients, but this effect weakened after 4 years. HRQoL of children is influenced by severity of haemophilia, bleeding rates, physical activity restriction, financial burden and treatment. Prophylactic treatment is a key factor contributing to event-free survivor prognosis and the optimal form of therapy for childhood haemophilia. BioMed Central 2019-02-06 /pmc/articles/PMC6366014/ /pubmed/30728017 http://dx.doi.org/10.1186/s12955-019-1083-3 Text en © The Author(s). 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research
Zhang, Heng
Huang, Jie
Kong, Xiaoyan
Ma, Gaoxiang
Fang, Yongjun
Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study
title Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study
title_full Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study
title_fullStr Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study
title_full_unstemmed Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study
title_short Health-related quality of life in children with haemophilia in China: a 4-year follow-up prospective cohort study
title_sort health-related quality of life in children with haemophilia in china: a 4-year follow-up prospective cohort study
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6366014/
https://www.ncbi.nlm.nih.gov/pubmed/30728017
http://dx.doi.org/10.1186/s12955-019-1083-3
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