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一项针对首次完全缓解的急性髓系白血病幸存者健康相关生活质量的单中心调查。

A Single Center Survey of Health-Related Quality of Life among Acute Myeloid Leukemia Survivors in First Complete Remission.

作者信息

Cheng M Jennifer, Smith B Douglas, Hourigan Christopher S, Gojo Ivana, Pratz Keith W, Blackford Amanda L, Mehta Ambereen K, Smith Thomas J

机构信息

1 Pain and Palliative Care Service, Clinical Center, National Institutes of Health , Bethesda, Maryland.

2 Division of Hematologic Malignancies, Department of Oncology, Sidney Kimmel Comprehensive Cancer Center at the Johns Hopkins Hospital , Baltimore, Maryland.

出版信息

J Palliat Med. 2017 Nov;20(11):1267-1273. doi: 10.1089/jpm.2017.0069. Epub 2017 May 24.

Abstract

BACKGROUND

Acute myeloid leukemia (AML) is one of the most common types of leukemia in adults, but there is limited information on survivors' quality of life (QOL) after remission.

OBJECTIVE

We piloted a survey exploring patient-reported outcomes for people with AML in first complete remission (CR1) to determine whether patients felt the survey is relevant to their well-being and to summarize patient characteristics.

DESIGN/MEASUREMENTS: Cross-sectional survey of a convenience sample of AML patients in CR1 assessing QOL and functioning (European Organization for Research and Treatment of Cancer [EORTC] QLQ-C30 v 3.0), well-being (QOL-cancer survivor [QOL-CS]), fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue [FACIT-Fatigue]), and anxiety and depression (hospital anxiety and depression scale [HADS]). The survey contained five open-ended questions.

RESULTS

Eighteen patients completed the survey. Most felt it was completely or mostly relevant (88.8%) in describing their QOL. Participants scored well on the EORTC QLQ-C30, fatigue being the most common symptom (83%).The FACIT-Fatigue mean score was 28.7 and median score was 33.5 (normal ≥30). Two scored in the abnormal range for anxiety and one for depression on the HADS. On the QOL-CS, participants scored more than 6 out of 10 in most domains, except the subscales of distress and fear.

CONCLUSIONS

The survey content and length were appropriate. Patients reported ongoing fatigue, fears of future test results, getting a second cancer, and recurrence of cancer. Survivors experience ongoing symptoms, highlighting the importance of providers performing ongoing symptom and needs assessments.

摘要

背景

急性髓系白血病(AML)是成人中最常见的白血病类型之一,但缓解后幸存者的生活质量(QOL)信息有限。

目的

我们开展了一项调查,探索首次完全缓解(CR1)的AML患者报告的结局,以确定患者是否认为该调查与他们的幸福感相关,并总结患者特征。

设计/测量:对CR1期AML患者的便利样本进行横断面调查,评估生活质量和功能(欧洲癌症研究与治疗组织[EORTC]QLQ-C30 v 3.0)、幸福感(癌症幸存者生活质量[QOL-CS])、疲劳(慢性病治疗功能评估-疲劳[FACIT-疲劳])以及焦虑和抑郁(医院焦虑抑郁量表[HADS])。该调查包含五个开放式问题。

结果

18名患者完成了调查。大多数人认为该调查在描述他们的生活质量方面完全或大部分相关(88.8%)。参与者在EORTC QLQ-C30上得分良好,疲劳是最常见的症状(83%)。FACIT-疲劳的平均得分是28.7,中位数得分是33.5(正常≥30)。在HADS上,两名患者焦虑得分在异常范围内,一名患者抑郁得分在异常范围内。在QOL-CS上,除了痛苦和恐惧子量表外,参与者在大多数领域的得分超过了10分中的6分。

结论

调查内容和长度合适。患者报告持续存在疲劳、对未来检查结果的恐惧、患第二种癌症以及癌症复发。幸存者经历持续的症状,凸显了医疗服务提供者进行持续症状和需求评估的重要性。

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