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
Keywords: 
Materias Investigacion::Ciencias de la Salud::Oncología
Terminal care
Quality of healthcare
Proxy
Survey and questionnaire
Cognitive interviewing
Quality of care for the dying
Issue Date: 
2019
Publisher: 
Sage Journals
Note: 
Artículo bajo licencia CC BY
Citation: 
Mayland, C.R. (Catriona Rachel); Gerlach, C. (Christina); Sigurdardottir, K. (Katrin); et al. "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". Palliative Medicine. 33 (3), 2019, 357 - 368
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’ (CODETM) 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 CODETM 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 CODETM. 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.

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