Abstract
Background: Patient Reported Outcome Measures (PROMs) provide valuable data on the quality of care. PROM use within specialist palliative care is growing, however, less used within settings where older people living with frailty are most likely to receive care in the last phase of life and under-researched.
Aim: To determine how PROMs are being used with older people living with severe frailty and how effective they are for assessing their experiences and priorities.
Methods: This multi-phased, mixed-methods study, grounded in implementation science and participatory approaches, includes.
1. A scoping review
2. A site-specific UK hospice study comprising 11 semi-structured interviews with healthcare professionals and 10 clinical non-participatory observations; a one-year retrospective case-note review of PROMs
3. Participatory Workshops
Findings: Existing PROMs used with older people living with frailty require revision to more fully capture this group's heterogeneous needs. The implementation of PROMs with older people living with frailty needs to also consider those supporting this group (caregivers and/or professionals). Distinguishing the use of PROMs from other clinical measurement tools is sometimes unclear.
Conclusion: This study raises questions about the use of multidimensional PROMs within a model of care that remains largely biomedical-focused. To implement a system-wide approach that captures and addresses what matters most to older people with severe frailty and their caregivers, PROMs must be used as part of the identification, discussion, and response cycle. The success of this approach relies on 1) using PROMs that can capture relevant needs, 2) supporting discussion with the individual and caregiver, and 3) care delivered within a system that is ready to respond to person-centred needs. Its findings provide an evidence base for further work to both support those involved using PROMs with group and also adapt a PROM that is able to capture this group's needs.