The impact of factor infusion frequency on health-related quality of life in people with haemophilia

G. Pedra, P. Christoffersen, K. Khair, X. Y. Lee, Sonia O’Hara, J. O’Hara, J. Pasi
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引用次数: 5

Abstract

Abstract Background Some studies suggest that people with haemophilia (PwH) who use prophylaxis value low frequency of clotting factor administration more than a lower risk of bleeding. However, more frequent infusions offer the potential of reducing joint disease and pain, which in turn may improve functioning and quality of life. Aims To explore the impact on health-related quality of life (HRQoL) aspects of haemophilia associated with adherence and annual infusion rate in the context of factors influencing treatment that are important to patients, including prophylaxis, chronic pain, concomitant conditions and hospital admission. Materials and methods HRQoL was assessed in participants with severe haemophilia in the ‘Cost of Haemophilia in Europe: a Socioeconomic Survey’ (CHESS) study who were using prophylaxis. Patients using on-demand treatment were excluded. This multivariate analysis examined the interaction between factors potentially influencing treatment and HRQoL, and minor and major bleeds. Results From the total CHESS population (n=1,285), 338 (26%) participants provided responses for major and minor bleeds and target joints, and 145 (11%) provided EQ-5D-3L responses. Major and minor bleeds were associated with pain. Patients with severe chronic pain reported a substantial negative impact on HRQoL; but this was significantly improved by increases in the annual infusion rate. This was not apparent in participants with mild or moderate pain. Conclusion Increasing the frequency of prophylaxis infusions is associated with improved quality of life in PwH who have severe chronic pain. However, increasing the number of infusions per week in those with mild or moderate chronic pain with the intention of improving prophylactic effect may not have the same effect.
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因子输注频率对血友病患者健康相关生活质量的影响
背景:一些研究表明,血友病患者(PwH)谁使用预防更重视凝血因子给药频率低出血的风险。然而,更频繁的输液提供了减少关节疾病和疼痛的潜力,这反过来可能改善功能和生活质量。目的探讨血友病患者健康相关生活质量(HRQoL)方面与依从性和年输注率相关的影响治疗的重要因素,包括预防、慢性疼痛、伴随疾病和住院。材料和方法在“欧洲血友病成本:一项社会经济调查”(CHESS)研究中,对使用预防措施的严重血友病患者的HRQoL进行评估。排除按需治疗的患者。这项多变量分析检查了可能影响治疗和HRQoL的因素以及轻微和严重出血之间的相互作用。结果在总CHESS人群(n=1,285)中,338(26%)名参与者对大、小出血和目标关节有反应,145(11%)名参与者对EQ-5D-3L有反应。大出血和小出血都伴有疼痛。重度慢性疼痛患者报告对HRQoL有显著的负面影响;但随着年输注速率的增加,这一点得到了显著改善。这在轻度或中度疼痛的参与者中并不明显。结论增加预防性输液频率可改善重度慢性疼痛PwH患者的生活质量。然而,对于那些有轻度或中度慢性疼痛的患者,为了提高预防效果而增加每周的注射次数可能不会有同样的效果。
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