Intolerable suffering among people with a life-limiting illness is a phenomenon many Canadians are grappling with today. Among the health care professionals working toward solutions is a Trinity Western University researcher who is leading the way in an e-tablet-based innovation that will reduce this suffering for patients in palliative acute and home-care nursing settings.
Rick Sawatzky is heading up a four-year, $1.75 million initiative to adapt and assess a tool that ensures patients’ voices are heard by clinicians and relatives involved in palliative care. Sawatzky is an associate professor of nursing at TWU. He is also a Canada Research Chair (tier 2) in patient-reported outcomes, and a scientist with Providence Health Care’s Centre for Health Evaluation and Outcome Sciences.
The initiative centres on the Quality of Life Assessment and Practice Support System (QPSS), a tablet-based, electronic practice support tool. On it, older people with chronic, life-limiting illnesses and their family caregivers can record information about health issues that are relevant to their quality of life and other health care experiences. Clinicians and administrators then use the feedback to inform future treatments and general health services.
“The voices of patients and family caregivers are not routinely represented in our health administrative systems,” says Sawatzky. “The current project seeks to address this problem.”
The first phase of the study, which ended in January, found that older adult patients and their family caregivers in palliative settings value the opportunity to voice their experiences and concerns. Researchers also found that with the tool, patients’ and family caregivers’ needs became more visible, and problems that would have otherwise not been identified came to light.
This second phase of QPSS evaluation began in October 2015. In consultation with patients as well as their family caregivers and clinicians, the research partners are now integrating the knowledge they gleaned from the study’s first chapter about desirable QPSS features, uses and workflow considerations.
Patients are finding the system user-friendly thus far. “I found the questions were easy to understand,” one patient said. “And it was easy for me to just read them on the tablet. When I got used to not pressing too hard and using the light touch, I found it easy to use. I’m very surprised.”
Sawatzky believes that the tool will ultimately help chronically ill people live better, longer lives. “It can help people to live comfortably at home while preventing acute situations that may involve hospitalization and over-prescription of medication, and eventually undue suffering,” he says.
Background:
Sawatzky’s funding includes $750,000 from Canadian Institutes of Health Research as well as $1 million in partnership funds from Fraser Health, Intogrey and Cambian. Partners include Canadian and international universities, health care providers in B.C. and Alberta, government and non-government organizations, and industry.
The QPSS system was developed by James Voth, the founding director of Intogrey Research and Development, in close collaboration with the research team, health care administration, clinicians, patients and family caregivers.
In addition to the current project, which is funded by the eHealth Innovations Partnership Program, the QPSS Initiative involves two CFN-funded catalyst projects, a partnership project with the hemophilia clinic at St. Paul’s Hospital, and a post-doctoral fellowship project by Marian Krawczyk at St. Paul’s Hospital.