When it comes to ensuring adequate healthcare in nursing homes and long-term care facilities, it’s important to learn what residents think about their care and comfort. One approach is to survey residents about their quality of life (QOL) and use the data for the facility report cards states and consumers use to rate the providers. U.S. regulatory officials and facility providers have been hesitant to include resident-reported QOL data in report cards out of concerns that the responses from aging residents may be inconsistent and unreliable — particularly from individuals with different forms of dementia. New research from the University of Minnesota School of Public Health proves resident survey responses about their own quality of life while in the facility are typically reliable — including those with dementia — and will make report cards more useful for consumers.

The findings of the research are based on two studies funded by a five-year grant from the National Institute of Minority Health Disparities and led by long-term care expert and Associate Professor Tetyana Shippee. Each study was first-authored by SPH doctoral students Weiwen Ng and Xuanzi Qin, respectively, with their mentor, Shippee, serving as senior author. The most recent study, written by Ng and published in the Journal of Aging and Social Policy, examined the general reliability of QOL data over a year period. The second study, written by Qin and published in July 2021 in the journal Innovation In Aging, focused on QOL data from residents with Alzheimer’s Disease and related dementia (ADRD) and their stability from year to year.

Shippee partnered with the Minnesota Department of Human Services on analyses of quality of life scores for the MN Nursing Home Report Card used to currently evaluate care facilities in the state.

“Minnesota is one of two states in the nation to have validated QOL data and there have been many calls for the Centers for Medicare & Medicaid Services to include quality of life in its report card, but the typical response is that we don’t have enough data on how reliable it is as a measure,” said Shippee. “This new research shows that overall QOL data is reliable and stable over time.”

The researchers determined that the QOL data is reliable by analyzing the consistency of answers reported by a random sample of more than 4,000 residents who completed the validated Minnesota state yearly surveys twice in two years. They looked at a two year period because that is the average time of stay for a resident in a nursing home. 

In the yearly surveys, residents were asked about different aspects of quality of life including a facility’s food, recreational activities, and relationships with staff. 

“For example, if someone said they were really dissatisfied with food in one year, we looked to see how they responded in the next year,” said Shippee. “We also accounted for compounding factors and health shocks, such as if someone was really sick or went to the hospital during one year then it’s likely they would rate some things lower due to changes in their own health.”

The researchers found that, overall, QOL responses from Minnesota’s nursing home residents are very consistent and stable over multiple years, and therefore, reliable indicators of how well a facility is caring for residents.

One key question regulators have wanted answered before requiring QOL report card data is determining if responses from residents with Alzheimer’s Disease and related dementia (ADRD) can be trusted. An estimated 5.8 million Americans aged 65 and older live with ADRD, and more than 60% of them live in long-term care facilities.

“We learned that people with dementia can consistently answer simple yes or no questions about their quality of life,” said Shippee. “There was some increased variability in how individuals responded to questions about particular domains from year to year. But, overall, after looking at multiple years, using different statistical techniques and accounting for other factors, we found that 87% of residents with mild-to-moderate dementia had stable and reliable scores, which are similarly stable as those from people without dementia.”

Shippee says that based on these findings, she thinks quality of life data from nursing home residents provides strong indicators of their well-being that should be used nationally and include people with dementia.