Which measures assessing quality of death and dying and satisfaction with care at the very end of life have been psychometrically validated? A systematic review

Abstract

Introduction The very end of life can be associated with pain, anxiety and caregiver burden. Numerous measures seek to assess the quality of death and dying and satisfaction with care, but there is a lack of evidence and consensus on the best tools. Aims To identify all existing tools for assessing quality of death and dying and the quality of care and satisfaction with care at the very end of life, and systematically evaluate those which have been psychometrically validated. Method Four databases (Medline, Embase, Cinahl and Psycinfo) were searched in February 2016 using a combination of MeSH and free-text terms on end of life and satisfaction with care. Article titles, abstracts and full-text papers were reviewed to identify all papers reporting multi-item measures for assessing quality of death and dying and/or quality of care and satisfaction with care at the very end of life. Articles reporting on at least one psychometric investigation of the measures identified were then assessed for quality, using the COSMIN checklist (Mokkink, 2010). Results The initial search terms identified 4136 articles after excluding any duplicates. Seventy-seven papers, reporting 48 different measures, met the initial inclusion criteria. The most commonly used measures were the Quality Of Death and Dying (QODD;Patrick, 2001) and FAMCARE (Kristjanson, 1986). Both have been validated in a variety of cultural settings and participant groups. Conclusion Many measures assess quality of death and dying and satisfaction with care, but few have been thoroughly validated. QODD and FAMCARE are the best of those assessed.

The Quality of Dying and Death of Advanced Cancer Patients in Palliative Care and Its Association With Place of Death and Quality of Care

“…13,29 Nonetheless, the evaluations carried out by family members can be used as an indirect measure of QoD. 13,30 In this study, the information provided by the family caregivers of the deceased patients was used to estimate QoD. An after-death evaluation of advanced cancer patients through a family caregiver who was with the patient in his last days of life will allow us to identify, evaluate, and disseminate interventions that improve the end of life care in the advanced cancer population.…”

“…Quality of dying and death is a difficult construct to measure and define 13,29 . Nonetheless, the evaluations carried out by family members can be used as an indirect measure of QoD 13,30 . In this study, the information provided by the family caregivers of the deceased patients was used to estimate QoD.…”

Palliative Care Experience in the Last 3 Months of Life: A Quantitative Comparison of Care Provided in Residential Hospices, Hospitals, and the Home From the Perspectives of Bereaved Caregivers

“…Concurrent validity was evidenced against the gold standard FAMCARE scale ( r s = 0.66, P < .001), which is one of the most widely used end-of-life satisfaction questionnaires. 25 The survey has been shown to be useful for helping to measure and assess quality of palliative care at end of life. 22,26…”

“…Concurrent validity was evidenced against the gold standard FAMCARE scale (r s ¼ 0.66, P < .001), which is one of the most widely used end-oflife satisfaction questionnaires. 25 The survey has been shown to be useful for helping to measure and assess quality of palliative care at end of life. 22,26 Palliative Care in Ontario Hospice care in Canada refers to care provided in a residential hospice (ie, a home-like facility), unlike in the United States where "hospice" more loosely denotes specialized palliative care in any setting.…”