Assessing quality of care for the dying: The development and initial validation of a postal self-completion questionnaire for bereaved relatives

Abstract

Background: Evaluating ‘quality of care for the dying’ from the patients’ perspective has practical and ethical difficulties: an alternative is to use bereaved relatives’ views as ‘proxy’ measures. Currently, within the United Kingdom, there is no validated instrument which specifically examines quality of care in the last days of life or the impact of the Liverpool Care Pathway (LCP) for the Dying Patient. Aim: To develop and validate a questionnaire for use with bereaved relatives assessing the quality of care for patients and families in the last days of life and the immediate period after the bereavement. Design: The instrument, ‘Evaluating Care and Health Outcomes – for the Dying’ (ECHO-D), was developed in four distinct phases: 1. Question formulation, 2. Expert panel review (n = 6), 3. Wider audience review (n = 25), 4. Pilot, including cognitive pre-testing interviews and preliminary test–retest reliability assessment with bereaved relatives (n = 80) Setting: The study was conducted within a hospice and an acute hospital involving healthcare professionals, lay members and bereaved relatives. Results: The systematic and robust process of questionnaire development generated evidence for ECHO-D’s face and content validity. Response rate for the pilot stage with bereaved relatives, however, was comparatively low (23.4%). Test–retest analysis from the pilot showed moderate or good stability for 13 out of 17 key questions, although small sample numbers limited the interpretation. Conclusions: ECHO-D is the first instrument specifically to assess ‘quality of care for the dying’, focussing on the last days of life, and has direct links with the use of the LCP Programme.