Supporting quality of life assessments of frail older adults and their family caregivers

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Older adults living at home facing frailty and chronic illness, and their family caregivers, often experience challenges affecting their quality of life. Their priorities must be addressed by healthcare providers. Unfortunately, these are easily overlooked in the “hustle and bustle” of care. Tools for assessing quality of life make the priorities of patients and family caregivers visible to healthcare providers and leaders. Our goal was to develop resources to support the use of quality of life assessment tools.

We met with four groups – older adults living with frailty and family caregivers, healthcare providers, healthcare leaders and government decision-makers – to identify their needs and the types of resources that would be helpful to them. Working with each group, we developed customized resources that included education materials (for in person and self-guided learning), videos and communication tools. These materials were made freely available via an existing online person-centred health information system, called the Quality of Life and Practice Support System (QPSS). The QPSS allows patients and family caregivers to complete quality of life assessment tools and share their information with healthcare providers.

This project will help put the voices of older adults living with frailty, and of their family caregivers, at the centre of healthcare. This goal unites patients, families, clinicians and healthcare and government leaders in the pursuit of a Canadian healthcare system that meets the needs of all Canadians.

Richard Sawatzky, PhD, RN is a Professor and Canada Research Chair in Person-Centred Outcomes at Trinity Western University (TWU). He is Head of the Patient-Reported Outcomes Program at the Centre for Health Evaluation and Outcome Sciences (www.cheos.ubc.ca) and leads the Patient-Centred Measurement Methods Cluster with the British Columbia SUPPORT Unit (www.bcsupportunit.ca), a multi-partner organization that carries out patient-oriented research in order to improve healthcare outcomes for all patients. Dr. Sawatzky’s research focuses on methods for person-centred outcome measurement and the use of quality of life assessment tools, with a particular emphasis on people who have chronic life-limiting illnesses and their family caregivers.

Kara Schick-Makaroff, PhD, RN is an Assistant Professor at the Faculty of Nursing, University of Alberta, and a federally funded New Investigator. She completed a Bachelor of Science (Nursing) at the University of Saskatchewan, a Master of Nursing (Policy and Practice) and PhD in Nursing at University of Victoria, followed by a post-doctorate fellowship at University of Alberta. The goal of her program of research is to enrich quality of life, enhance person-centred care, and improve services for people living with chronic and life-limiting illnesses. A major focus of Dr. Schick-Makaroff’s research is to provide evidence relating to the routine clinical use of electronic patient-reported outcomes (ePROs) in multidisciplinary care of chronic and life-limiting illnesses, particularly chronic kidney disease.