Tom Crocker, PhD
Academic Unit for Ageing and Stroke Research, Bradford Institute for Health Research
Frailty in older people is a vulnerability to major declines in health, such as loss of independence, caused by apparently minor events, such as a bladder infection. Improving quality of life (QOL) is increasingly becoming a focus for healthcare services in this population. In our paper published here, we comprehensively reviewed past studies that had looked at the association between frailty and QOL. We also looked at what studies measured when they were interested in QOL, and how the people who developed the measures conceptualised them.
We found that quality of life is substantially worse for older people living with frailty than for those who are not. Despite likely adjustment in expectations (so-called response shift), there were medium to large differences between people with and without frailty across multiple dimensions of quality of life and overall.
I am lucky enough to work in the Academic Unit for Ageing and Stroke Research, one of the leading centres for frailty research. Professor Andy Clegg led development of the electronic Frailty Index (eFI), which measures frailty based on deficits already recorded in electronic health records. This is strongly predictive of adverse outcomes and is now available in all general practices in England. We have a substantial track record of conducting systematic reviews extending back to the early days of the Cochrane Collaboration. We also have a proud history of patient and public involvement in our work and recognising the importance of meaningful patient-reported outcomes.
In 2015 we set up the Community Ageing Research 75+ (Care 75+) ageing and frailty cohort. Early data suggested an association between frailty and both the Short Form 36 (SF-36) and EuroQol 5 dimensions (EQ-5D) instruments. We were also interested in the different ways quality of life can be conceptualised and how appropriate some measures were for people with frailty, mindful of the possibility of floor effects and changing needs and interests. It was from here that we conducted the systematic review.
About the Review
The measures in our review were designed to measure quality of life, life satisfaction, psychological and general well-being, and self-rated health, or other similar terms. Some QOL measures are conceptually similar to frailty measures (health-focused), while others are quite different (life satisfaction and well-being). Even where the QOL measure was conceptually distinct from frailty, QOL remained worse for the people with frailty.
Within this broad picture there were some interesting subtleties. For example, both the Older People’s Quality of Life (OPQOL) questionnaire and the World Health Organization Quality of Life assessment short-form (WHOQOL-bref) contain some similar domains. However, where the social and environment scales of the WHOQOL-bref indicated medium to large differences for people with frailty, the social, home and finance scales of the OPQOL indicated little to no difference. This may relate to some difference in the populations that were measured or the support they were receiving. It could indicate subtle differences in the questionnaire scales, or it could point to a problem in the OPQOL.
Where to go from here?
Many important questions remain. The measures of quality of life that are most relevant to people with frailty remain unclear, although this work highlighted that many existing measures are responsive to differences in frailty state. Most of the evidence simply divided participants into two groups, people with and without frailty, and so it was unclear whether quality of life continues to decrease with each increasing level of frailty. Also, most of the existing evidence came from snapshots in time, and so it was unclear whether worsening frailty led to worsening quality of life, and whether good quality of life could protect against decline in frailty. New research suggests that physical and mental functioning are predictive of frailty 25 years later. Does this mean that if we improved someone’s functioning we would improve the chance they remained in robust health? Would the same be true of psychological and social well-being? Do cultural or societal differences affect the relationship between quality of life and frailty? Most importantly, what changes can we make to improve quality of life for people living with frailty, and how should these changes be tailored so that they fit with the desires and needs of each person?
This newsletter editorial represents the views of the author and do not necessarily reflect the views of ISOQOL.
How to Submit a Newsletter Editorial
Do you have something to share about health related quality of life and patient-centered outcomes? We want to hear from you!
The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).
Together, we are creating a future in which patient perspective is integral to health research, care and policy.