Perspectives of patients, family caregivers and health professionals on the use of outcome measures in palliative care and lessons for implementation: a multi-method qualitative study.

Joanna M Davies,Ping Guo,Cathryn Pinto,Irene J Higginson,Marsha Dawkins,Katherine Bristowe,Susanne De Wolf-Linder,Fliss E M Murtagh,Barbara Daveson,Jana Witt

doi:10.21037/apm.2018.09.02

Abstract

Routine use of outcome measures in palliative care is recommended to demonstrate and improve quality of care. The use of outcome measures is relatively recent in UK specialist palliative care services and understanding their use in practice is key to successful implementation. We therefore aimed to explore how patient-centred outcome measures are used in specialist palliative care, and identify key considerations for implementation. Multi-method qualitative study (semi-structured interviews and non-participant observation). Patients, family caregivers and health professionals were purposively sampled from nine specialist palliative care services (hospice, hospital and community settings) in London, UK. Framework analysis, informed by the Consolidated Framework for Implementation Research (CFIR), was undertaken. Thirty eight interviews and nine observations were conducted. Findings are presented according to the five CFIR domains: (I) intervention: participants highlighted advantages, disadvantages and appropriateness of outcome measures in palliative care; (II) outer setting: policy and national drivers are necessary to encourage use of outcome measures; (III) inner setting: information technology infrastructure, organisational drive, and support from peers and leadership were institutional factors that shaped the use of outcome measures; (IV) individual: clear rationale for using outcome measures and skills to use them in practice were essential; (V) implementation: stepwise introduction of outcome measures, regular feedback sessions, and champions/facilitators were important to strengthen routine use. All CFIR domains need consideration for effective implementation. Outcome data needs to be fed back to and interpreted for professionals in order to improve and sustain outcome data collection, and drive meaningful improvements in palliative care.

Highlights

Measuring patient and caregiver outcomes can improve the quality and efficiency of care [1-3]
Perceptions were positive if Patient-centred outcome measures (PCOMs) were used in daily clinical interactions and perceptions were negative if there was no response to data collected from PCOMs
We described the importance of using PCOM data to make clinical decisions and demonstrate the impact of palliative care

Summary

Introduction

Measuring patient and caregiver outcomes can improve the quality and efficiency of care [1-3]. Previous studies have identified potential facilitators and barriers to implementing outcome measures in palliative care [9,10] and highlighted an urgent need for training and support for their use [3,11]. Findings are presented according to the five CFIR domains: (I) intervention: participants highlighted advantages, disadvantages and appropriateness of outcome measures in palliative care; (II) outer setting: policy and national drivers are necessary to encourage use of outcome measures; (III) inner setting: information technology infrastructure, organisational drive, and support from peers and leadership were institutional factors that shaped the use of outcome measures; (IV) individual: clear rationale for using outcome measures and skills to use them in practice were essential; (V) implementation: stepwise introduction of outcome measures, regular feedback sessions, and champions/facilitators were important to strengthen routine use. Outcome data needs to be fed back to and interpreted for professionals in order to improve and sustain outcome data collection, and drive meaningful improvements in palliative care

Objectives

Discussion

Conclusion