A longitudinal evaluation of health-related quality of life in patients with AL amyloidosis: associations with health outcomes over time.
A longitudinal evaluation of health-related quality of life in patients with AL amyloidosis: associations with health outcomes over time.
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DOI：
10.1111/bjh.14889
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发表时间：
2017-11
影响因子：
6.5
通讯作者：
Skinner M
中科院分区：
文献类型：
--
作者：
Sanchorawala V;McCausland KL;White MK;Bayliss MS;Guthrie SD;Lo S;Skinner M
轻链淀粉样变性是一种罕见的疾病，伴有严重的、不可逆的器官功能障碍和高病死率。进行了一项观察性研究，以评估1994年至2014年期间接受高剂量美法仑和干细胞移植（HDM/SCT）或非SCT化疗方案治疗的AL淀粉样变性患者的健康相关生活质量（HRQoL）。在诊所访视期间，使用SF-36 v1 ®健康调查问卷（SF-36）评估HRQoL。采用方差分析比较各治疗组治疗前和治疗后HRQoL与年龄和性别校正的一般人群（GP）标准样本。拟合考克斯比例风险模型，以检查治疗前HRQoL水平与开始特定治疗方案后1年和5年内死亡率之间的相关性（HDM/SCT：n = 402;非SCT化疗方案：n = 172）。在接受HDM/SCT的患者中，治疗后在活力、社会功能、角色情感和心理健康方面有显著改善。治疗前SF-36身体成分评分越差，两个治疗组和随访期的死亡风险越高（两组均P ≤ 0·005）。[首次在线发布后于2017年10月20日添加更正：该P值已被更正]。在每次医生就诊或治疗中使用HRQoL评估可能为治疗AL淀粉样变性等罕见疾病提供有价值的见解。
Light chain (AL) amyloidosis is a rare disease associated with significant, irreversible organ dysfunction and high case fatality. An observational study was conducted to assess health‐related quality of life (HRQoL) in patients treated for AL amyloidosis between 1994 and 2014 with both high dose melphalan and stem cell transplantation (HDM/SCT) or non‐SCT chemotherapy regimens. The SF‐36v1® Health Survey (SF‐36) was administered to assess HRQoL during clinic visits. Analysis of variance was used to compare pre‐ and post‐treatment HRQoL within each treatment group to an age‐ and gender‐adjusted general population (GP) normative sample. Cox proportional hazard models were fit to examine associations between pre‐treatment levels of HRQoL and mortality within 1 and 5 years after initiating specific treatment regimens (HDM/SCT: n = 402; non‐SCT chemotherapy regimens: n = 172). Among patients who received HDM/SCT, there were significant improvements following treatment in vitality, social functioning, role‐emotional and mental health. Worse pre‐treatment SF‐36 physical component scores were associated with a greater risk of mortality in both treatment groups and follow‐up periods (P ≤ 0·005 for both). [Correction added on 20 October 2017, after first online publication: This P value has been corrected]. Using HRQoL assessments in every physician visit or treatment may provide valuable insights for treating rare conditions like AL amyloidosis.
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影响因子：
12.8
作者：
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通讯作者：
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影响因子：
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10.1
作者：
Palladini, Giovanni;Milani, Paolo;Merlini, Giampaolo
通讯作者：
Merlini, Giampaolo