Measuring what matters

People living with life-limiting conditions are often concerned with more than just their physical health needs. A review of the needs of older people living with frailty found that the things that matter most to them include:

- quality of life

- maintaining their strengths and relationships

- being involved in conversations about their current and future care [1]

Despite this, care services are often oriented toward addressing individuals’ physical health needs. Outcome measures are often designed around how to measure the quality of physical care [2].

How can you ensure we are capturing, measuring, and addressing what matters most to the people you care for? On this page, we've put together some information to help.

Patient reported outcome measures (PROMs) and Patient reported experience measures (PREMs) are examples of person-centred tools, which can capture a person’s experiences and look at outcomes from the point of view of the person experiencing them [3].

This means they prioritise what is important to the person receiving care.

PROMs and PREMs are increasingly used in service evaluations and can help clinicians identify and act upon unmet need [4].

Tools developed for palliative care populations

Other person-centred approaches to capturing outcomes and experiences of those with frailty: 

You should consider which service markers and metrics you can use to reflect whether you are meeting your patients' preferences for care. These include:

Preferred place of care (PPoC) helps you identify whether individuals’ preferences are being heard and acted upon. This should not be considered synonymous with Preferred Place of Death (PPoD).

Unplanned hospital admissions, 30-day re-admissions and emergency visits are routinely collected to measure care across a setting. Such metrics have been shown to increase for older adults with frailty in the last year of life.

• Nicholson, C.J. et al. Addressing inequity in palliative care provision for older people living with multimorbidity. Perspectives of community-dwelling older people on their palliative care needs: A scoping review. Palliative Medicine. 2022.
• Collins, A. Measuring What really matters. Towards a coherent measurement system to support person-centred care. [Internet]; 2014 April [cited 2023 Jan 26].
• Johnston, B. et al. Patient reported outcome measures for measuring dignity in palliative and end of life care: a scoping review. BMC Health Services Research. 2017; 17.
• Bowling, A. Research Methods in Health: Investigating health and health services. 4th ed. Maidenhead: Open University Press; 2014.