Putting Patients First: Assessing Quality of Life

Imagine being an older adult, living with frailty. You’re weak, tired, things are just plain difficult. Imagine how nice it would be if your doctor understood how you feel, understood how depressed you can get, how impossible the idea of preparing a simple meal sometimes seems. Imagine if your doctor understood how upsetting you find it when they just tell you what you need, instead of asking what you want.

Or, imagine being a caregiver to an older adult living with frailty. You’re tired, while dealing with your problems and helping someone else through theirs. It is stressful and it can be scary, and the doctor might be able to help you with that, but you don’t know how to ask.

Dr. Rick Sawatzky thinks about these things a lot. Sawatzky is a Professor and Canada Research Chair in Person-Centred Outcomes at Trinity Western University. Much of his research focuses on quality of life assessments.

“Quality of life assessments are about using standardized tools to bring to the forefront how patients and family caregivers are doing with regard to their health and their experiences with health care,” says Sawatzky. “Our focus is specifically on frail older adults and their family caregivers.”

In the first part of Sawatzky’s research project, he and his team developed an online person-centred health information system, called the Quality of Life and Practice Support System (QPSS). This system allows patients and family caregivers to complete quality of life assessment surveys and share their information with healthcare providers. Sawatzky says the unique thing about it is that for the first time in the health care journey of patients and their caregivers, they are in the driver’s seat, establishing terms for a discussion with their doctor.

“This is not to replace the discussion they need to have with providers. This is just an entry piece so they can come to their provider and say look, I’ve been struggling with my emotional wellbeing and here is how it has looked over time.”

With the success of the QPSS, the research team then moved on to the assessment tools that would be used on the system. They created what they called an innovation community made up of four groups – older adults living with frailty and family caregivers, healthcare providers, healthcare leaders and government decision-makers, to identify the types of resources that would be helpful to them. Those customized resources, including education tools, videos and communications tools, were developed, and the QPSS now allows patients and family caregivers to complete quality of life assessment tools and share their information with healthcare providers.

Dr. Sawatzky’s research is funded in part by the Canadian Frailty Network (CFN), which works to improve care for older adults living with frailty. Dr. John Muscedere is the Scientific Director of CFN.

“What we love about this project is that it helps put older adults living with frailty, as well as their family caregivers, at the centre of healthcare. People who are frail often have trouble making others understand what they are going through, and what they need. This will help with that.”

The QPSS and the assessment tools developed by Sawatzky and his team are available free to patients and caregivers. They are not free for physicians, but his hope is that they will see the value of using it.

“My dream is that all older adults living with frailty and family caregivers will be able to easily and efficiently communicate their quality of life concerns to physicians, so their physicians can in turn make those concerns into a priority.”