Cultural adaptation and validation of the Quality of Dying in Long-term Care (QoD-LTC and QoD-LTC-C) scales by caregivers in nursing homes.

Abstract

There is a lack of tools that can evaluate quality of dying in nursing homes from the perspective of deceased patients' caregivers. The aim of this study was to adapt and validate the caregivers' versions of the Quality of Dying in Long-Term Care (QoD-LTC) and Quality of Dying in Long-Term Care Complete (QoD-LTC-C) scales in the Spanish context. This was a cultural adaptation and validation study. The scales were translated from English to Spanish and vice versa, and 13 experts in end-of-life care participated in a two-round Delphi panel. Caregivers of 69 deceased residents from seven nursing homes in southern Spain completed both scales. Reliability, feasibility, and concurrent validity with global quality of dying perception and symptom burden (Edmonton Symptom Assessment Scale), were evaluated. Spanish caregivers' version of the QoD-LTC scale showed good internal consistency for the total scale (α = 0.74) and each of its three factors, and good inter-rater reliability (ICC = 0.50) and test-retest reliability (ICC = 0.81). The Spanish QoD-LTC-C scale for caregivers showed good internal consistency for the total scale (α = 0.81) and for its component factors, and good test-retest reliability (ICC = 0.89) and inter-rater reliability (ICC = 0.66). Both scales correlated with family caregivers' global perception of deceased residents' quality of dying (r = 0.39; r = 0.32), but not with the ESAS score. Both scales presented an adequate factorial structure, internal consistency, and reliability to assess caregivers' perception of the quality of dying in Spanish nursing homes.