Impact of electronic palliative care coordination systems (EPaCCS) on care at the end of life across multiple care sectors, in one clinical commissioning group area, in England: a realist evaluation protocol.

Abstract

Electronic palliative care coordination systems (EPaCCS) aim to support people approaching the end of life (EOL) to receive consistent care, according to their wishes, that is coordinated effectively across multiple care sectors. They are in use across the UK although empirical evidence into their effectiveness is poor. This paper presents a protocol of a mixed-methods study, to understand how, and by whom, EPaCCS are being used and whether EPaCCS are enabling Healthcare Professionals (HCPs) to coordinate patients' EOL care. This is a mixed-methods study, carried out within a realist paradigm, to evaluate the impact of an EPaCCS on EOL care as provided by a Clinical Commissioning Group (CCG) in England. This study has two aims: (1) Describe the socio-demographic characteristics of patients who die with an EPaCCS record, their underlying cause of death and place of death and compare these with patients who die without an EPaCCS record. (2) Explore the impact of an EPaCCS on the experience of receiving EOL care for patients and their carers, and understand HCPs' views and experiences of utilising an EPaCCS to coordinate care for their patients. The study will be conducted in five phases: (1) development of the initial programme theory; (2) focus group with CCG stakeholder board; (3) individual interviews with HCPs, patients, current and bereaved carers; (4) retrospective cohort study of routinely collected data on EPaCCS usage and (5) data analysis and synthesis of study findings. The study has been approved by National Health Service South West-Frenchay Research Ethics Committee (REC reference number: 18/SW/0198). Findings will be published in a wide range of outputs targeted at key audiences.