Abstract
BackgroundPalliative 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.MethodsA 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.ResultsWe 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.ConclusionsThe 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.
Highlights
Palliative Care (PC) is an approach that improves the Quality of Life (QoL)
According to the development stage of the Medical Research Council (MRC) framework for complex interventions [24], we assumed that a clinical intervention focused on QoL assessment should be based on a number of components that form a coherent structure, and that all such components - standardized by form and functions - linked the interventions to the expected outcomes
We hypothesized a supporting theory based on the World Health Organization (WHO) Population Screening Principles [28] that we modified and contextualized to QoL assessment in palliative care practice
Summary
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. 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. Quality of life assessment A number of QoL assessment tools have been developed and validated in palliative care [9] and their use described for research purposes [10], to support clinical practice [11], and as part of the quality programs [12]. A number of observational studies have described and analysed QoL impairments of palliative care patients in different settings [13]. Two systematic reviews [17,18] concluded that QoL assessment is feasible in clinical trials and has the potential of providing valuable outcomes to further support clinical decision-making
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