通过经过验证的工具衡量生活质量

Q4 Medicine
Shiela Marie S. Laviña, MD, MsCM
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This evaluation provides a preview of what it is like to be ill based on the individual’s unique personal experience that changes through time and disease course.1 \nWorld Health Organization (WHO) has defined Quality of Life (QOL) as a “person’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.”1 Health-related QOL, on the other hand, is a multidimensional consideration of how patients are affected by their illness diagnosis and management.2   There are tools available to determine QOL and can implicitly provide the impact of diseases on an individuals’ daily activities.   \nQuestionnaires currently available to measure quality of life can be divided into two categories: generic surveys intended for the general population and tools that are for disease-specific populations. 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引用次数: 0

摘要

生活质量需要在每位患者的临床治疗中加以考虑,并应成为整体护理的重要组成部分。 对生活质量的衡量将提供一个背景,并评估身体疾病对患者日常生活的影响。这种评估基于个人独特的个人经历,并随着时间和病程的变化而变化,提供了对患病感受的预览。世界卫生组织(WHO)将 "生活质量"(QOL)定义为 "一个人在其生活的文化和价值体系背景下,结合其目标、期望、标准和关注点,对其生活状况的感知"。 目前可用于衡量生活质量的问卷可分为两类:针对普通人群的通用调查和针对特定疾病人群的工具。3 Manalo 和 Nicolas-Casem 的文章中针对菲律宾癌症患者的慢性病治疗功能评估-姑息治疗(FACIT-PAL-14)工具就是为特定人群设计的工具的一个例子。QOL 既是医疗护理的重要组成部分,也是癌症研究的重要成果。有必要对 QOL 进行测量,因为这将有助于医疗服务提供者了解癌症诊断、治疗或姑息治疗对日常生活的影响。这将有助于识别最新的身体-情感状况、制定明智的决策以及评估医疗干预措施。 测量生活质量等概念的工具需要在当地进行语言翻译和验证,尤其是在不同文化背景下使用另一种语言制作的工具。 然而,对工具进行验证以确保其能够测量所需的评估内容,既是一项具有挑战性的任务,也是一项资源密集型任务。与健康相关的生活质量问卷所面临的挑战包括不同的心理测量特性、不同程度的验证以及患者的依从性。3 应强调适当验证技术的重要性,因为未按照标准适当开展的研究会产生无效结果。有几种方法有助于确定 QOL 测量工具的有效性和可靠性。 最初将工具翻译成当地语言时,应进行回译,聘请几位专业翻译人员或成立一个委员会,负责比较原始版本和翻译版本。5 结构效度可通过将新表格与确定相同概念的其他工具进行比较来确定,通常通过两种测量方法之间的一致程度进行评估。心理测量指数(如 Cronbach's alpha)经常被用作验证指标,以证明问卷项目之间的内部可靠性。5 在 Manalo 和 Nicolas-Casem 的文章4 中,他们确定了他加禄语版本的 FACITPAL-14 的心理测量特性。这是一项横断面研究,涉及伊洛戈斯省一家肿瘤门诊部的 500 名癌症患者。研究结果表明,该工具的可靠性尚可,但与两种测量表现状况的工具的相关性较差。不过,关于当地方言版本、抽样程序以及对比工具的语言翻译状况的描述信息不足。 通过经过验证的工具来测量生活质量是评估福祉、状态和残疾感知的重要部分。 然而,这些工具需要证明其有效性和可靠性。患者需要塔加路语翻译的、经过验证的、简短的问卷,这不仅适用于生活质量或姑息治疗,也适用于慢性病患者,还可以用于评估家庭支持、人际关系或功能。工具验证并非易事,但必须要做,最好是进行更多文化敏感性更强、更准确的验证研究。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Measuring Quality of Life through Validated Tools
Quality of life needs to be considered in every patient clinical encounter and should be a vital component of wholistic care.  Its measurement will give a context and assess the impact of physical illness on patients’ daily life. This evaluation provides a preview of what it is like to be ill based on the individual’s unique personal experience that changes through time and disease course.1 World Health Organization (WHO) has defined Quality of Life (QOL) as a “person’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.”1 Health-related QOL, on the other hand, is a multidimensional consideration of how patients are affected by their illness diagnosis and management.2   There are tools available to determine QOL and can implicitly provide the impact of diseases on an individuals’ daily activities.   Questionnaires currently available to measure quality of life can be divided into two categories: generic surveys intended for the general population and tools that are for disease-specific populations. Short form survey (SF-36) is the most widely known and used generic tool for QOL.3 Functional Assessment of Chronic Illness Therapy-Palliative (FACIT-PAL-14) Instrument for Filipino cancer patients in the article by Manalo and Nicolas-Casem is an example of a tool designed for a specific population.4 Palliative care patients are a vulnerable population with a wide range of difficulties, disabilities, and physical-mental fatigue. QOL is both an essential component of medical care and a significant outcome in cancer research. There is a need to measure QOL as it would assist health care providers to understand how the diagnosis of cancer, treatment or palliative care has affected daily life. This can lead to the recognition of the latest physical-emotional status, formulation of informed decisions, and evaluation of medical interventions.  Tools that measure constructs such as quality of life need language translation and validation in the local setting, particularly if created using another language in a different culture.  However, validation of instruments to ensure that it will measure what it needs to evaluate is both a challenging and resource-intensive task. Challenges in health-related quality of life questionnaires include varying psychometric properties, different levels of validations, and patient compliance.3 The importance of suitable validation techniques should be underscored as research not suitably conducted according to standards yields invalid results. There are several ways that will help establish validity and reliability of a tool to measure QOL.  The initial translation of an instrument into the local language should be substantiated with back-translation, engagement of several professional translators or addition of a committee tasked to compare the original to translated version.5 Construct validity can be established by comparing the new form to other tools that determine the same concepts and is typically evaluated by degree of agreement between the two measures.6 The last step in the process would include measurement of psychometric properties and pilot testing. Psychometric index such as Cronbach’s alpha is often reported as a validation measure to demonstrate internal reliability among questionnaire items.5 In the article by Manalo and Nicolas-Casem,4 they determined the psychometric property of a Tagalog version of FACITPAL-14. It was a cross-sectional study involving 500 cancer patients in an outpatient oncology clinic in the Ilocos Province. The tool had shown acceptable reliability and poor correlation with two instruments that measure performance status. There was, however, inadequate information on a local dialect version, sampling procedures, and on descriptions of the language translation status of the comparison tools.   Measuring Quality of Life through validated tools is a vital part in the assessment of well-being, status, and perception of disability.  However, these instruments need to show validity and reliability. Tagalog-translated, validated, shortened questionnaires are needed for patients, not just for quality of life or palliative care, but also for individuals with chronic diseases, and conceivably in the assessment of family support, relationships, or function. Tool validation is not an easy undertaking, but it needs to be done, preferably with more culturally sensitive and accurately done validation studies.  
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Acta Medica Philippina
Acta Medica Philippina Medicine-Medicine (all)
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