Implementing patient-centred outcome measures in palliative care clinical practice for adults (IMPCOM): Protocol for an update systematic review of facilitators and barriers

The importance of using outcome measures to understand the effect and effectiveness of health interventions has been growing as they are increasingly credited as an essential component of evidence-based clinical practice, specifically, outcome measures that the patient completes - so-called patient-reported outcome measures or PROMs - because of their specificity to patients’ individual needs. Data collected at the individual patient level can be used immediately for patient-centred care, as it allows healthcare professionals to act on any distressing symptoms or palliative needs they might have. It can also inform shared decision-making and advance care planning (Antunes et al. 2014, 2022; Antunes and Ferreira 2020). Additionally, PROMs data can be aggregated for audit, research, quality improvement and benchmarking (Currow et al. 2015). However important the PROMs are, measuring can be challenging when the patient is becoming too ill or approaching the end of their life.

In palliative and end-of-life care, it is equally important to learn about physical effects and psychological, existential, emotional and practical outcomes. However, implementing PROMs as a routine part of palliative care clinical practice has been slow and challenging in a number of countries. Compared to other settings and conditions, measuring outcomes in palliative care faces unique challenges. One reason is that patients’ health is expected to deteriorate, and symptoms may worsen; deterioration will make the outcome measurement challenging, as well as changes in cognitive abilities towards the end of life. PROMs are impossible to use closer to the time of death once the patient becomes unable to communicate (Bausewein et al. 2011). This raises ethical and practical challenges when proxy outcome measurements are used for patients with cognitive impairments (Martins Pereira and Hernández-Marrero 2018).

Our previous review summarised barriers, facilitators, and lessons learned from the published palliative care literature and provided recommendations for implementing outcome measures at the patient, healthcare professional, and management and policy-makers levels for three timepoints: preparation, implementation, and assessment/improvement (Antunes et al. 2014).

Our new systematic review will update and expand the previous review conducted in 2013 on facilitators, barriers, and lessons learned in implementing PROMs in palliative care clinical practice. In addition, we will seek to identify the implementation models used and the costs of implementing those measures. We will also review the literature concerning patient-centred outcome measures reported by family members and healthcare professionals when the patient is not able to do so themselves. For this review, we will use the term ‘patient-centred outcome measures’ (PCOMs) to include both patient-reported and proxy-reported measures that focus on the concerns important to patients.