The Myelofibrosis Symptom Assessment Form (MFSAF): an evidence-based brief inventory to measure quality of life and symptomatic response to treatment in myelofibrosis.

The Myelofibrosis Symptom Assessment Form (MFSAF): an evidence-based brief inventory to measure quality of life and symptomatic response to treatment in myelofibrosis.
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DOI:
10.1016/j.leukres.2009.01.035
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发表时间:
2009-09
期刊:
影响因子:
2.7
通讯作者:
Tefferi A
Tefferi A
中科院分区:
医学3区
文献类型:
--
作者:
Mesa RA;Schwager S;Radia D;Cheville A;Hussein K;Niblack J;Pardanani AD;Steensma DP;Litzow MR;Rivera CE;Camoriano J;Verstovsek S;Sloan J;Harrison C;Kantarjian H;Tefferi A

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骨髓纤维化 (MF) 患者的生活质量 (QoL) 因严重的全身症状(即疲劳、盗汗、发烧、体重减轻)、瘙痒和频繁出现的肝脾肿大症状而严重受损。鉴于目前尚不存在涵盖 MF 患者独特症状谱的患者报告结果 (PRO) 工具,我们寻求为 MF 患者开发一种新的 PRO 工具,用于治疗性临床试验。利用对 458 名 MF 患者进行的国际互联网调查数据,我们创建了一个包含 20 项的工具(MFSAF:骨髓纤维化症状评估表),用于测量 > 10% 的 MF 患者报告的症状,并包括 QoL 测量。随后,我们在一项针对 MF 患者的前瞻性试验中验证了 MFSAF,该试验涉及患者和提供者的反馈,以及与癌症患者使用的其他经过验证的仪器的比较。 MFSAF 结果与其他仪器高度相关,患者判断全面且易于理解,应考虑用于治疗试验中 MF 症状的评估。
Quality of life (QoL) in patients with myelofibrosis (MF) is severely compromised by severe constitutional symptoms (i.e. fatigue, night sweats, fever, weight loss), pruritus, and symptoms from frequently massive hepatosplenomegaly. Given that no current instrument of patient reported outcomes (PRO) exists that covers the unique spectrum of symptomatology seen in MF patients, we sought to develop a new PRO instrument for MF patients for use in therapeutic clinical trials. Utilizing data from an international internet based survey of 458 patients with MF we created a 20 item instrument (MFSAF: Myelofibrosis Symptom Assessment Form) which measures the symptoms reported by >10% of MF patients, and includes a measure of QoL. We subsequently validated the MFSAF in a prospective trial of MF patients involving patient and provider feedback, as well as comparison to other validated instruments used in cancer patients. The MFSAF results were highly correlated with other instruments, judged comprehensive and understandable by patients, and should be considered for evaluation of MF symptoms in therapeutic trials.
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