Developing a programme theory of implementing patient-reported outcome measures for older people living with severe frailty: a mixed methods study using the consolidated framework for implementation research

TL;DR

This study explores how to better use patient-reported outcome measures for older people with severe frailty to capture their palliative care needs.

Contribution

The study develops a programme theory for implementing PROMs in palliative care for older people with severe frailty using the CFIR framework.

Findings

Existing PROMs need adaptation to better capture the needs of older people with severe frailty.

Healthcare professionals often rely on others to complete PROMs for this group.

Use of PROMs is influenced more by immediate care priorities than long-term changes.

Abstract

Older people with severe frailty (OPWSF) have palliative needs but typically do not receive specialist palliative care (SPC). Patient-Reported Outcome Measures (PROMs) may offer valuable means to capture these needs. There is a limited understanding of what to include and how to implement PROMs in settings where this group receive most care. The study aimed to: (1) Critically examine how existing PROMs are currently implemented with OPWSF within a SPC setting. (2) Understand how the items with the PROMs are used (3) Develop a programme theory to determine how PROMs can be optimally designed and implemented to effectively capture the needs and priorities of OPWSF in the care setting where they receive most care.

Mixed methods study in SPC community service in an urban area in the UK including: • Healthcare professionals (HCPs) providing care to OPWSF with a minimum of 6 months experience in a patient-facing role were purposively sampled: semi-structured interviews (n11); non-participatory observations (n10) - thematically analysed. • One-year retrospective case-note review of 357 episodes of care involving service-users identified with frailty at referral. Exploratory descriptive statistics were used to analyse the use of the Integrated Palliative Outcome Scale (IPOS) alongside additional clinical-led outcome measures. • Date integration using the Consolidation Framework for Implementation Research (CFIR) to develop a programme theory.

PROMs can be effectively used with OPWSF, yet existing PROMs require adapting to ensure they capture the needs that matter most. • Completion of PROMs for this group largely depends on the assistance of others. • HCPs’ use of PROMs may be driven by immediate care and priorities of the care system rather than determining changes over time, with the psycho-social aspect of the PROMs being more challenging to complete.

By utilising the CFIR, the study highlights the complexities and variabilities of using PROMs with OPWSF. Future research should focus on adapting and validating existing PROMs to ensure they are fit for purpose with this population, with the involvement of older people with frailty and unpaid carers. Providers should extend support and training for professionals in the use and value of PROMs and psychosocial-spiritual care.

The online version contains supplementary material available at 10.1186/s41687-025-00951-9.

Figures