Selecting the best instruments to measure quality of end-of-life care and quality of dying in long term care

Selecting the best instruments to measure quality of end-of-life care and quality of dying in long term care Published as MC van Soest-Poortvliet, JT van der Steen, S Zimmerman, LW Cohen, D Reed, WP Achterberg, MW Ribbe, HCW de Vet. Selecting the best instruments to measure quality of end-of-life care and quality of dying in long-term care. ABSTRACT Objectives: To compare available instruments and investigate which best measure the quality of end-of-life care (QOC) and quality of dying (QOD) in long term care settings, in terms of validity, reliability, and feasibility. Design: Family and professional caregivers of long term care decedents completed post-death interviews and questionnaires Setting: Nursing home and residential care/assisted living settings in the United States and the Netherlands. Participants: Two hundred and sixty four families of decedents with (48%) and without (52%) dementia in the United States, and 70 families and 103 professional caregivers of decedents with dementia in the Netherlands. Measurements: Ten instruments to evaluate the QOC and QOD in long term care, an additional overall assessment of QOC/QOD, and an assessment of the perception of the relevance and ease of use of each instrument. Criteria for validity, reliability, and feasibility were set forth for good, intermediate, and poor performance. met more of the criteria than others. The EOLD-CAD performed better on content and construct validity than the MSSE. The MSSE performed better on feasibility. Conclusion: We recommend the EOLD-SWC to measure QOC, and the EOLD-CAD and MSSE to measure QOD in populations with dementia and in mixed long term care populations of nursing home or residential care home/assisted living residents, because they performed best in both countries. Use of the same instruments allows for comparison of the results between studies.