Abetz Linda, Baladi Jean-Francois, Jones Paula, Rofail Diana
Mapi Values Ltd, Adelphi Mill, Grimshaw Lane, Bollington, Cheshire, SK10 5JB, UK.
Health Qual Life Outcomes. 2006 Sep 28;4:73. doi: 10.1186/1477-7525-4-73.
To assess the literature for the impact of iron overload and infusion Iron Chelation Therapy (ICT) on patients' quality of life (QoL), and the availability of QoL instruments for patients undergoing infusion ICT. Also, to obtain patients' experiences of having iron overload and receiving infusion ICT, and experts' clinical opinions about the impact of treatment on patients' lives.
A search of studies published between 1966 and 2004 was conducted using Medline and the Health Economic Evaluation Database (HEED). Qualitative results from patient and expert interviews were analysed. Hand searching of relevant conference abstracts completed the search.
Few studies measuring the impact of ICT with deferoxamine (DFO) on patients QoL were located (n = 15). QoL domains affected included: depression; fatigue; dyspnoea; physical functioning; psychological distress; decrease in QoL during hospitalization. One theme in all articles was that oral ICT should improve QoL. No iron overload or ICT-specific QoL instruments were located in the articles. Interviews revealed that the impact of ICT on patients with thalassemia, sickle cell disease, and myelodysplastic syndromes is high.
A limited number of studies assessed the impact of ICT or iron overload on QoL. All literature suggested a need for easily administered, efficacious and well tolerated oral iron overload treatments, given the impact of current ICT on adherence. Poor adherence to ICT was documented to negatively impact survival. Further research is warranted to continue the qualitative and quantitative study of QoL using validated instruments in patients receiving ICT to further understanding the issues and improve patients QoL.
评估有关铁过载及静脉注射铁螯合疗法（ICT）对患者生活质量（QoL）影响的文献，以及适用于接受静脉注射ICT患者的生活质量评估工具的可用性。此外，了解患者铁过载及接受静脉注射ICT的经历，以及专家对治疗对患者生活影响的临床意见。
使用Medline和卫生经济评估数据库（HEED）检索1966年至2004年间发表的研究。对患者和专家访谈的定性结果进行分析。通过手工检索相关会议摘要来完成检索。
找到少量测量去铁胺（DFO）ICT对患者生活质量影响的研究（n = 15）。受影响的生活质量领域包括：抑郁；疲劳；呼吸困难；身体功能；心理困扰；住院期间生活质量下降。所有文章中的一个共同主题是口服ICT应能改善生活质量。文章中未找到针对铁过载或ICT的特定生活质量评估工具。访谈显示，ICT对地中海贫血、镰状细胞病和骨髓增生异常综合征患者的影响很大。
仅有少数研究评估了ICT或铁过载对生活质量的影响。鉴于当前ICT对依从性的影响，所有文献均表明需要易于给药、有效且耐受性良好的口服铁过载治疗方法。据记录，对ICT的依从性差会对生存产生负面影响。有必要进行进一步研究，继续使用经过验证的工具对接受ICT治疗的患者的生活质量进行定性和定量研究，以进一步了解问题并改善患者的生活质量。
