IRCCS AOU San Martino - IST Istituto Nazionale per la Ricerca sul Cancro, Genoa, Italy.
Health Qual Life Outcomes. 2013 Jan 14;11:7. doi: 10.1186/1477-7525-11-7.
Palliative Care (PC) is an approach that improves the Quality of Life (QoL). A number of QoL assessment tools have been developed and validated in PC. It is not clear how QoL should be measured in PC practice. A procedure of QoL assessment in clinical practice can be defined as a clinical intervention focused on QoL assessment. This is a typical complex intervention that should be appropriately developed and described in all its components and assessed for its effectiveness. The aim of this study is to define a framework to help researchers to develop and evaluate clinical interventions focused on QoL assessment in PC.
A study group of experts in PC and in research methodology was set up to define a framework that would describe the principles of clinical interventions focused on QoL assessment in PC. The study group discussed the WHO Population Screening Principles as a possible useful framework. The new principles had to be developed taking into account the following criteria: 1) specific to PC practice; 2) address a single underlying characteristic; 3) anchored to relevant literature; 4) consistent with the WHO PC definition.With regard to contents and the format of the principles, discussions occurred among the study group members through a cognitive process.
We reviewed each of the WHO Population Screening Principles and adapted them to QoL assessment, taking into account the defined criteria. As a result, a new framework, the QoL Assessment Principles in Palliative Care was developed. It consisted of 4 sections, for a total of 11 principles.
The WHO Screening Principles framework was used to outline the eleven essential principles to be considered in developing and/or evaluating clinical interventions focused on QoL assessment in PC. The QoL Assessment Principles in Palliative Care identified could represent a methodological and ethical standard to be considered when developing and evaluating a clinical intervention focused on QoL assessment in PC.
姑息治疗（PC）是一种提高生活质量（QoL）的方法。已经开发并验证了许多用于姑息治疗的 QoL 评估工具。目前尚不清楚在姑息治疗实践中应该如何衡量 QoL。临床实践中的 QoL 评估程序可以定义为专注于 QoL 评估的临床干预。这是一种典型的复杂干预，应该在所有组成部分中进行适当的开发和描述，并评估其效果。本研究的目的是定义一个框架，帮助研究人员开发和评估专注于姑息治疗中 QoL 评估的临床干预措施。
成立了一个姑息治疗和研究方法学专家小组，以定义一个框架，该框架将描述专注于姑息治疗中 QoL 评估的临床干预措施的原则。研究小组讨论了世界卫生组织人口筛查原则作为一种可能有用的框架。新原则必须在考虑以下标准的情况下制定：1）特定于姑息治疗实践；2）针对单个潜在特征；3）以相关文献为依据；4）与世界卫生组织姑息治疗定义一致。关于原则的内容和格式，研究小组成员通过认知过程进行了讨论。
我们审查了世界卫生组织人口筛查原则中的每一条，并根据定义的标准对其进行了调整，以适应 QoL 评估。结果，制定了一个新的框架，即姑息治疗中的 QoL 评估原则。它由 4 个部分组成，共 11 条原则。
使用世界卫生组织筛查原则框架概述了在开发和/或评估专注于姑息治疗中 QoL 评估的临床干预措施时应考虑的 11 条基本原则。姑息治疗中的 QoL 评估原则可以作为一种方法学和伦理标准，在开发和评估专注于姑息治疗中 QoL 评估的临床干预措施时加以考虑。
