A new quality of life instrument for aged care

A blog post written by Dr Claire Hutchinson, Research Fellow, Health and Social Care Economics Group, College of Nursing and Health Sciences, Flinders University

The Health and Social Care Economics team in the College of Nursing and Health Sciences at Flinders University has recently developed a new quality of life instrument that can be used in aged care for quality assessment and for economic evaluation.

Quality of life is an important outcome in aged care where curative treatments may no longer be the main focus. In terms of economic evaluation, preference-based quality of life instruments can be converted into QALYs (quality adjusted life years); a composite score based on the quality of life and length of life, and a key outcome in economic evaluation. Economic evaluation support decision-makers to invest in interventions, services, and supports that have the most positive impact on the lives of older people.

The dimensions of quality of life instruments are often developed from literature reviews and/or from clinical opinion. However, our quality of life instrument has been developed from inception, and at every stage, with older people themselves.

Stage 1 of the project involved in-depth qualitative interviews with older people living in the community and in residential aged care. From these interviews, we developed a model of quality of life with six dimensions: independence, mobility, pain management, emotional well-being, social connections, and activities.

We then developed potential items for the new measure from these dimensions, using the language used by the older people we talked to. For example, older people did not talk about depression or their mental health but rather about being worried, stressed, or ‘feeling blue’. In Stage 2 we again went back to older people to gather both qualitative and quantitative data on the potential items so that we could select the items that best represented the dimensions. Consumers and providers were also involved in this stage to make sure that the final instrument was going to be acceptable to final users as well as reliable and valid.

We are now making the instrument called ‘Quality of Life: Aged Care Consumers’ or QOL-ACC available for use with a simple summative score (0-24). The final stage, Stage 3, will commence in June 2021. This will involve collecting data on the instrument from a large sample of older Australians in residential care and community care using a combination of surveys and interviews. This data will be used to create the scoring algorithm that will allow the QOL-ACC to be used for economic evaluation.

By the end of this calendar year, the final year of our three-year project, approximately 3,000 older Australians will have been involved in the development of the final QOL-ACC instrument. We are grateful for their participation and for providing their perspectives on what is most important to them as they age.

The Royal Commission report has now recommended the routine collection of quality of life data in aged care from mid-2023. We hope that the inclusion of this important non-clinical outcome will drive the funding of interventions that improve the quality of life of older Australians using aged care services.

Claire talks more about the QOL-ACC in this video.

Note. Funding for the project was provided by the Australian Research Council, the Caring Futures Institute, and five founding aged care providers who have partnered with us in this research. We also thank our affiliate aged care providers who have supported us with recruitment for the project.

Dr Claire Hutchinson, Research Fellow, Health and Social Care Economics Group, College of Nursing and Health Sciences, Flinders University