Assessing quality of care for the dying from the bereaved relatives’ perspective: Using pre-testing survey methods across seven countries to develop an international outcome measure

Abstract

Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the 'Care Of the Dying Evaluation' (CODE TM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODE TM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODE TM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives' perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying.

Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives’ experiences during the COVID-19 pandemic

“…The internationally used CODE™ questionnaire focuses on quality of care and family support during the last days of life. 11 One key outcome from CODE™ is whether or not respondents perceive themselves to be adequately supported in the last days of life. Free-text space was available for additional comments.…”

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway

“…A multicentre, post-bereavement observational study was conducted in bereaved family members of patients with cancer dying in the hospital setting, by use of the i-CODE questionnaire [11]. This qualitative sub study analyzed free text comments made by Norwegian participants, addressing aspects of care during the final illness trajectory.…”

“…The project 'International Care Of the Dying Evaluation (CODE): quality of care for cancer patients as perceived by bereaved relatives' (2017-2020) was funded by the Network of the European Union (EU) and the Community of Latin American States (CELAC) on Joint Innovation and Research Activities (ERANet-LAC) with the aim to advance the international evidence-base in care for the dying [10]. This involved undertaking an international survey of relatives to cancer patients dying in hospitals in seven countries across Europe and South America, by use of the international version of the CODE™ questionnaire [11]. In Norway, the call for improving end-of-life (EOL) care on all levels of the healthcare system has recently been outlined in a Norwegian Official Report (NOU) [12].…”

Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives’ Survey within Seven Countries

“…A more recent systematic review identified CODE TM as an instrument, with some strong psychometric properties, which would benefit from further development and validation [ 18 ]. Hence, pretesting survey methods helped ensure the CODE TM questionnaire had good face and content validity and was suitable for use in the seven countries [ 19 ].…”

“…This time frame seemed acceptable because a previous study found no difference in terms of distress when approaching bereaved relatives 2 weeks and 6 weeks after the death [ 20 ]. Additionally, it was in keeping with the time frame used within our pretesting study [ 19 ].…”