SALTY Stream 1 research update: If we can't measure it, we can't change it

Handwritng a list
Photo by Glenn Carstens-Peters on Unsplash

The overall goal of SALTY stream 1 is to develop an approach that enables researchers, policy makers and care facilities to validly and reliably measure quality of end of life care in nursing homes on an ongoing basis.

In the TREC Trajectories work, we have identified lists of 21 burdensome symptoms and 11 potentially inappropriate care practices at the end of life in nursing homes that we can measure using RAI-MDS 2.0 items. Currently, we are working with key knowledge users (regional/provincial health decision makers, managers and care providers in care facilities, and residents and their family members) on prioritizing these outcomes to reduce the number of outcomes on the lists. This will facilitate our data analyses and the development of a longitudinal profile to monitor and improve quality of care at the end of life in nursing homes.

Current achievements and activities

This Fall, we conducted web-based Delphi panels with 14 health decision makers from the Calgary and Edmonton Health Zones, the Fraser and Interior Health Regions, and the Alberta and British Columbia Governments. In an iterative process, participants selected the four symptoms and the three care practices that they were most interested in getting regular feedback on.

We are currently planning to conduct similar web-based Delphi panels with the SALTY Advisory Group and the TREC VOICES group (Voices of Individuals and Family and Friend Care Givers Educating Us). This will add the critically important perspective of older adults living with dementia and their family/friend caregivers.

We are also actively recruiting participants for an online survey (care aides, licensed practical nurses, registered nurses, allied health providers, clinical specialists, care unit manager, directors of care and medical directors). Similar to the Delphi panels, participants will also be asked to select the four symptoms and three care practices they think are most critical to get regular feedback on.

On November 6th, SALTY principal investigator Janice Keefe and SALTY co-investigators Katie Aubrecht, Dee Taylor, Della Roberts, and Matthias Hoben hosted the first of four SALTY sector engagement workshops. Workshops are intended to be a small engagement activity between the four SALTY streams and senior long term care sector leaders from government, NGOs, administration, and, residents, care givers and volunteers, in each study province (NS, ON, AB and BC). The intent of these engagement events is to check-in with stakeholders early in the projects life to build interest in the project and to provide an opportunity to help shape our work early on.

The first workshop was held at the Mount Saint Vincent University with key decision makers and stakeholders from the Nova Scotia long term care sector. The day was very successful based on the feedback we received. The stakeholders, who represented the Ministry, health authority, long term care associations and other relevant organizations such as Alzheimer Society and the Hospice Association, reported the workshop was a valuable use of their time and met their expectations.

Next steps

We plan to finalize our prioritization work this winter, and start with the development of longitudinal measures of quality of care for residents at end of life in the spring. We will first use TREC data to develop the profiles, and then further test them using Canadian national data we just received from the Canadian Institute for Health Information (CIHI, over 1.4 Million resident records!).