Does quality of life assessment in palliative care look like a complex screening program?

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.