International Care Of the Dying Evaluation (CODE): quality of care for cancer patients as perceived by bereaved relatives'

Aim:

Advance the international evidence base in the care of dying cancer patients by undertaking an observational study of bereaved relatives' views about the current quality of care within hospital settings across seven participating countries Develop an international version of the post-bereavement questionnaire "Care Of the Dying Evaluation" (CODE), to be used as an international standard and benchmarking tool Use the two main concerns identified from bereaved relatives of cancer patients to implement key changes in clinical care, using transnational cooperation and involving bereaved relatives in the action planning, and to assess the immediate direct impact of these changes from a healthcare professional and family point of view.

Specific objectives:

Conduct an international survey of bereaved relatives of cancer patients using the CODE questionnaire. Use anonymized data from the CODE questionnaire to provide feedback about the quality of care and level of family support at an international and national level, allowing for cross-country comparisons. Based on the main concerns, as perceived by bereaved people, use the expertise and experience of the EU and LAC partners to make action plans to implement key changes within individual organizations' clinical environment in two countries.

Assess the immediate direct impact of these changes from a family and healthcare professional point of view, by using action research including brief, structured interviews.

Expected results:

An international survey and cross-country comparison about the current quality of care for dying cancer patients as perceived by bereaved people, including key areas where care needs to be improved Translated, tested and culturally adapted versions of CODE in six languages, and a common, core version for international use to systematically standardize assessment and care. Assessment of the initial impact of utilising the CODE results into clinical changes in practice. An established EU LAC clinical and research network as a basis for future collaboration