Researchers call for rigorous evaluation of EPaCCs

6th June 2019

Advance care plans allow individuals to specify their wishes and preferences for treatment and care, and have been proposed as a quality indicator for end-of-life care. For advance care planning to impact maximally on patients and their caregivers, plans need to be made available to all relevant health professionals, including out-of-hours and primary care services, so that care can be delivered in line with patients’ preferences, in a coordinated manner.

Researchers at the Cicely Saunders Institute set out to systematically search, evaluate and report the state of the science of EPaCCS (Electronic Palliative Care Coordination Systems) in order to identify gaps in the evidence and make recommendations for policy and research. They conducted a systematic review of articles evaluating or discussing electronic systems to facilitate sharing of information about advance care plans. Two independent review authors screened full‐text articles for inclusion, assessed quality and extracted data.

In total, 30 articles and reports were included. Of the 26 articles, 14 were ‘expert opinion’ articles (editorials, discussion papers or commentaries), 9 were observational studies (cross-sectional, retrospective cohort studies or service evaluations), 2 were qualitative studies and 1 a mixed-methods study. No study had an experimental design. Quantitative studies described the proportion of people with EPaCCS dying in their preferred place, and associations between EPaCCS use and hospital utilisation. Qualitative, mixed-methods studies and reports described the burden of inputting data and difficulties with IT systems as main challenges of implementing EPaCCS.


Researchers concluded that much of the current scientific literature on EPaCCS comprises expert opinion, and there is an absence of experimental studies evaluating the impact of EPaCCS on end-of-life outcomes. Given the current drive for national roll-out of EPaCCS by 2020, it is essential that rigorous evaluation of EPaCCS is prioritised.


Publication details:

Leniz J, Weil ARF, Higginson IJ, Sleeman KE. Electronic Palliative Care Coordination Systems (EPaCCS): a systematic review. BMJ Supportive and Palliative Care. 2019; 10.1136/bmjspcare-2018-001689.