Summary

Research goals

The overall goal of this work is to develop a set of quality measures to monitor the trajectory of modifiable symptom burden and potentially inappropriate care practices at the end of life (EoL) in nursing homes (NHs). To meet this goal, we will consult with residents, family members, and other NH experts to identify highly burdensome symptoms and inappropriate care practices at EoL from Resident Assessment Instrument – Minimum Dataset (RAI-MDS) 2.0 data. These longitudinal measures will ultimately inform our understanding of the EoL experience in NHs and make possible the implementation and evaluation of interventions to improve this experience.

Background

Quality of EoL care is generally poor in NHs across developed countries, reflected by high rates of modifiable symptom burden and care practices inconsistent with optimal EoL approaches. Jurisdictions across Canada and internationally report on NH quality measures. The currently used suite of measures in Canada are derived from the RAI-MDS 2.0, a valid, reliable tool of 500+ items including clinical, functional and behavioural measures. While there are useful measures for monitoring quality in general, little is known about how to optimally exploit and combine these measures to best reflect specific EoL quality issues – a significant omission given the prevalent EoL care quality problems.

Research Aims

• Aim 1: Consult with residents, family members, care providers and decision makers to identify symptoms and practices with the greatest impact on EoL care and resident experience. We will develop summary ratings of burdensomeness of symptoms, appropriateness of practices, and perceived costs related to those practices. We will then rank symptoms and practices in order of impact, based on prevalence and participant ratings of burdensomeness and cost.
• Aim 2: Use RAI-MDS 2.0 data from an available sample of NHs from Western Canada (collected through the Translating Research in Elder Care program) to build and test longitudinal quality measures for EoL care in NHs, based on identified symptoms and practices.
• Aim 3: Validate the quality measures using national RAI-MDS 2.0 data. We will use data from the Canadian Institute for Health Information Continuing Care Reporting System to further test indicator performance in evaluating variations in quality at the facility level.
• Aim 4: Assess the interpretability of the selected indicators, optimal ways to present results to different audiences, and strategies to improve NH quality based on those indicators. We will solicit feedback on our profile of indicators from clinicians, administrators, policy makers, paid and unpaid caregivers, family members, residents, and researchers in panel discussions.

Core Expertise

This project partners investigators of all levels: senior, mid, early career and trainees, and it includes knowledge users. The team has expertise in knowledge translation, quality and safety in NHs, Epidemiology, and RAI-MDS 2.0 data.

Expected Outcomes

A minimum set of previously validated RAI-MDS 2.0 quality measures reflecting burdensome symptoms and potentially inappropriate practices at the EoL that have the greatest impact on residents, and that can be used for longitudinal monitoring and improvement of quality of EoL care.