A new study led by the Oxford Health Biomedical Research Centre’s (OH BRC) Preventing Multiple Morbidities Theme offers new insights into how we measure quality of life for adults living with multiple long-term conditions (MLTCs).
Someone is classified as have MLTCs when they have two or more ongoing physical or mental health problems. This affects millions of people and often leads to complex care needs, reduced life expectancy and poorer wellbeing. Until now, measuring how these conditions impact daily life has been challenging, making it harder for health services to plan support that truly meets patients’ needs.
This work was funded by the NIHR Team Science Award, established to advance understanding and care for people living with MLTCs in the UK. The project brings together 10 co-investigators across 10 institutions in the UK, combining diverse expertise in health measurement, lived experience, and applied health research.
For the study, researchers are interested in understanding which quality of life measures are most commonly being used in research with people living with MLTCs, and whether these tools adequately capture what “living well” means for people with MLTCs.
Traditional clinical measures are often generic, and there is a need for these tools to be expanded or personalised to focus on what matters most such as independence, emotional wellbeing and social participation.
Current healthcare systems often prioritise disease-specific outcomes, like blood pressure or blood sugar levels. While important, these measures don’t tell the whole story.
People with MLTCs often say that being able to manage everyday activities, maintain relationships and feel in control of their health matters most. This study highlights that quality of life should be a central goal of treatment and care and calls for wider use of more tailored measures in NHS services and future research.
Lead researcher Dr Megan Kirk Chang and OH BRC Preventing Multiple Morbidities subtheme lead said: “The preliminary findings show that most quality of life measures used in MLTC research are generic, and key MLTC conditions, such as patients with vision loss, cognitive impairment, or a palliative condition, are missing from the research.
“While we are still in the early stages, we can see the importance of ensuring existing quality of life measurement tools accurately capture what matters most to adults living with MLTCs.
“Our Patient and Public Involvement panel has been instrumental in shaping this research, and we look forward to sharing our full results to help clinicians and policymakers better understand what matters most to patients so they can design tailored treatment and services that meet patients where they are.”
“This approach puts the person, not just the condition, at the heart of care planning.”
Read the full protocol paper, “Patient-reported quality of life (QoL) measurements in adults with multiple long-term conditions: A scoping review protocol”, which was published recently in the Journal of Multimorbidity and Comorbidity.
To learn more about the work of OH BRC, email: ohbrcenquiries@oxfordhealth.nhs.uk
