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Quality-of-Life Assessment and Pharmacokinetic Study in Hemophilia A Patients Undergoing Prophylactic Treatment.接受预防性治疗的甲型血友病患者的生活质量评估及药代动力学研究
Pharmacy (Basel). 2025 Feb 2;13(1):16. doi: 10.3390/pharmacy13010016.

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Anxiety and depression among adults with haemophilia A: Patient and physician reported symptoms from the real-world European CHESS II study.血友病 A 成人患者的焦虑和抑郁:来自真实世界的欧洲 CHESS II 研究中患者和医生报告的症状。
Haemophilia. 2024 May;30(3):743-751. doi: 10.1111/hae.14989. Epub 2024 Mar 20.
2
Health-related quality of life following valoctocogene roxaparvovec gene therapy for severe hemophilia A in the phase 3 trial GENEr8-1.在 3 期试验 GENEr8-1 中,使用 valoctocogene roxaparvovec 基因疗法治疗重度 A 型血友病后的健康相关生活质量。
J Thromb Haemost. 2023 Dec;21(12):3450-3462. doi: 10.1016/j.jtha.2023.08.032. Epub 2023 Sep 6.
3
Pain, depression and anxiety in people with haemophilia from three Nordic countries: Cross-sectional survey data from the MIND study.北欧三国血友病患者的疼痛、抑郁和焦虑:来自 MIND 研究的横断面调查数据。
Haemophilia. 2022 Jul;28(4):557-567. doi: 10.1111/hae.14571. Epub 2022 Apr 23.
4
Association between reported medication adherence and health-related quality of life in adult patients with haemophilia.报告的药物依从性与成年血友病患者健康相关生活质量之间的关系。
Int J Clin Pharm. 2021 Dec;43(6):1500-1507. doi: 10.1007/s11096-021-01270-x. Epub 2021 Apr 29.
5
Health-related quality of life and health status in adolescent and adult people with haemophilia A without factor VIII inhibitors-A non-interventional study.血友病 A 患者(无因子 VIII 抑制剂)的青少年和成年患者的健康相关生活质量和健康状况:一项非干预性研究。
Haemophilia. 2021 May;27(3):398-407. doi: 10.1111/hae.14270. Epub 2021 Feb 12.
6
Health-related quality of life of moderate and severe haemophilia patients: Results of the haemophilia-specific quality of life index in Korea.中重度血友病患者的健康相关生活质量:韩国血友病特定生活质量指数的结果。
PLoS One. 2020 Sep 3;15(9):e0238686. doi: 10.1371/journal.pone.0238686. eCollection 2020.
7
Health-related quality of life of hemophilics and its possible correlates: A perspective in health promotion and disability prevention.血友病患者的健康相关生活质量及其可能的相关因素:健康促进与残疾预防视角
J Educ Health Promot. 2019 Dec 31;8:257. doi: 10.4103/jehp.jehp_249_19. eCollection 2019.
8
Hemophilia and sexual health: results from the HERO and B-HERO-S studies.血友病与性健康:HERO和B-HERO-S研究结果
Patient Relat Outcome Meas. 2019 Aug 14;10:243-255. doi: 10.2147/PROM.S211339. eCollection 2019.
9
Interrelationship between depression, anxiety, pain, and treatment adherence in hemophilia: results from a US cross-sectional survey.血友病患者抑郁、焦虑、疼痛与治疗依从性之间的相互关系:一项美国横断面调查的结果
Patient Prefer Adherence. 2019 Sep 20;13:1577-1587. doi: 10.2147/PPA.S212723. eCollection 2019.
10
Evaluation of quality of life in hemophilia patients using the WHOQOL-bref and Haemo-A-Qol questionnaires.使用世界卫生组织生活质量简表(WHOQOL-bref)和血友病生活质量问卷(Haemo-A-Qol)评估血友病患者的生活质量。
Hematol Transfus Cell Ther. 2019 Oct-Dec;41(4):335-341. doi: 10.1016/j.htct.2019.03.010. Epub 2019 Jul 4.

希腊北部血友病患者人群生活质量的回顾性观察研究

A Retrospective Observational Study of Quality of Life in a Northern Greece Population of People with Haemophilia.

作者信息

Moka Eleni, Ntova Zacharo, Gavriilaki Eleni, Kotsiou Nikolaos, Chissan Sofia, Papadopoulou Theodosia, Vakalopoulou Sofia

机构信息

2nd Propedeutic Department of Internal Medicine, Hippokration General Hospital, 54642 Thessaloniki, Greece.

出版信息

Life (Basel). 2024 May 29;14(6):697. doi: 10.3390/life14060697.

DOI:10.3390/life14060697
PMID:38929680
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11205034/
Abstract

Haemophilia presents a significant challenge to the quality of life of affected individuals. Evaluating the health-related quality of life (HRQoL) of people with haemophilia (PwH) provides a valuable mean of assessing their perception of overall care outcomes, while also identifying influential factors across various age and condition severity demographics. This observational retrospective study determined the HRQoL of 100 adult PwH in Northern Greece through comprehensive analysis and interpretation of their HRQoL levels, particularly in domains concerning their physical, emotional, and mental well-being, obtained through the Haem-A-QoL index questionnaire. Disease severity and young age were significantly associated with the administration of prophylactic treatment (84.2% of patients with severe haemophilia and 65.2% of patients aged 18-30). The mean Haem-A-QoL score was 40.11 ± 17.38, with the lowest HRQoL observed in the 46-60 age group (46.16), and the highest in the ≥61 age groups (35.16). Notably, the 'Sports/Leisure' and 'Physical Health' domains exhibited the highest scores, in contrast to 'Family Planning' and 'Relationships/Sexuality'. Individuals with mild haemophilia recorded the lowest mean score (39.38), while those with a severe condition exhibited the highest (41.23). Age, disease severity, and physical activity emerged as primary determinants significantly affecting HRQoL outcomes.

摘要

血友病对患者的生活质量构成了重大挑战。评估血友病患者(PwH)与健康相关的生活质量(HRQoL),为评估他们对整体护理结果的认知提供了一种有价值的手段,同时还能确定不同年龄和疾病严重程度人群中的影响因素。这项观察性回顾性研究通过对100名希腊北部成年血友病患者的HRQoL水平进行全面分析和解读,确定了他们的HRQoL,特别是通过Haem-A-QoL指数问卷获得的有关其身体、情感和心理健康的领域。疾病严重程度和年轻与预防性治疗的实施显著相关(84.2%的重度血友病患者和65.2%的18 - 30岁患者)。Haem-A-QoL平均得分为40.11±17.38,46 - 60岁年龄组的HRQoL最低(46.16),≥61岁年龄组最高(35.16)。值得注意的是,“体育/休闲”和“身体健康”领域得分最高,而“计划生育”和“人际关系/性”领域得分则相反。轻度血友病患者的平均得分最低(39.38),而重度患者得分最高(41.23)。年龄、疾病严重程度和身体活动是显著影响HRQoL结果的主要决定因素。