Patient-Centred Quality of Life Measurement in Sleep Health: Closing the Gap for Public Health Equity and Policy
1
Flinders University, Adelaide, Australia
Popul. Med. 2026;8(Supplement Supplement 1):
ABSTRACT
BACKGROUND:
Sleep disorders affect a substantial proportion of Australians and contribute to broader burdens in mental health, productivity, and social wellbeing. Despite this, public health interventions are often evaluated using standardised quality-of-life (QoL) instruments developed largely from clinical or expert perspectives. This may overlook patient-prioritised outcomes and weaken the equity and relevance of health policy decisions.
AIM:
To examine the alignment between existing QoL instruments and the lived priorities of people with sleep disorders, and to identify additional patient-driven domains needed for more inclusive public health evaluation.
METHODS:
A national survey of 1000 Australians compared 500 adults with diagnosed sleep disorders to 500 health professionals, researchers, and carers without sleep disorders. Twenty QoL domains were synthesised from ten commonly used global instruments and patient focus group findings. Domains were ranked using drag-and-drop prioritisation, Best–Worst Scaling (multinomial logit models), and Content Validity Ratios to quantify perceived relevance across groups.
RESULTS:
A substantial valuation gap was observed. While the comparator group prioritised “usual activities” (ranked 3rd), individuals with sleep disorders ranked this 7th, instead prioritising “excessive daytime sleepiness” (2nd vs. 10th) and “ability to concentrate.” Participants with sleep disorders also identified critical domains absent from standard tools, including stigma, fear of medicalisation, and impacts on intimacy and relationships. Only 60% of the top domains valued by the expert group were considered important by patients.
CONCLUSIONS:
Current QoL metrics may fail to capture the full social and psychological burden of sleep disorders, limiting the validity of population health surveillance and risking inequitable resource allocation. Public health evaluation frameworks must incorporate patient-driven, equity-sensitive domains to ensure policies reflect community priorities and address social determinants such as stigma.
Sleep disorders affect a substantial proportion of Australians and contribute to broader burdens in mental health, productivity, and social wellbeing. Despite this, public health interventions are often evaluated using standardised quality-of-life (QoL) instruments developed largely from clinical or expert perspectives. This may overlook patient-prioritised outcomes and weaken the equity and relevance of health policy decisions.
AIM:
To examine the alignment between existing QoL instruments and the lived priorities of people with sleep disorders, and to identify additional patient-driven domains needed for more inclusive public health evaluation.
METHODS:
A national survey of 1000 Australians compared 500 adults with diagnosed sleep disorders to 500 health professionals, researchers, and carers without sleep disorders. Twenty QoL domains were synthesised from ten commonly used global instruments and patient focus group findings. Domains were ranked using drag-and-drop prioritisation, Best–Worst Scaling (multinomial logit models), and Content Validity Ratios to quantify perceived relevance across groups.
RESULTS:
A substantial valuation gap was observed. While the comparator group prioritised “usual activities” (ranked 3rd), individuals with sleep disorders ranked this 7th, instead prioritising “excessive daytime sleepiness” (2nd vs. 10th) and “ability to concentrate.” Participants with sleep disorders also identified critical domains absent from standard tools, including stigma, fear of medicalisation, and impacts on intimacy and relationships. Only 60% of the top domains valued by the expert group were considered important by patients.
CONCLUSIONS:
Current QoL metrics may fail to capture the full social and psychological burden of sleep disorders, limiting the validity of population health surveillance and risking inequitable resource allocation. Public health evaluation frameworks must incorporate patient-driven, equity-sensitive domains to ensure policies reflect community priorities and address social determinants such as stigma.
| eISSN: | 2654-1459 |
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