Validation of a modified VOICES survey to measure end-of-life care quality: the CaregiverVoice survey

Background: Measuring the care experience at end-of-life (EOL) to inform quality improvement is a priority in many countries. We validated the CaregiverVoice survey, a modified version of the VOICES questionnaire, completed by bereaved caregivers to capture perceptions of care received in the last three months of a patient's life. Methods: We conducted a retrospective survey of bereaved caregivers representing palliative care patients who died in a residential hospice and/or received palliative homecare in Ontario, Canada. Statistical analyses were completed to establish construct and concurrent validity, as well as reliability of the survey. Results: Responses were obtained from 906 caregivers: 330 surveyed from homecare agencies and 576 from hospices. The CaregiverVoice survey demonstrated concurrent validity in scores correlating to FAMCARE2 items, and construct validity in performing according to expected patterns, e.g., correlation of scores to qualitative perceptions and significant variability based on care contexts such as place of death and setting of care (p < 0.01). Reliability was exhibited in good inter-item correlation of ratings for specific care settings and no significant differences in ratings regardless of whether up to a year had passed since death of patient. Conclusions: The CaregiverVoice survey demonstrated validity and reliability in the populations assessed. This survey represents one common measure that can be standardized across multiple care settings and is useful for assessing the care experience that can help inform local and national quality improvement activities.