Electronic palliative care coordination systems (EPaCCS): a systematic review

OBJECTIVES: To systematically search, evaluate and report the state of the science of electronic palliative care coordination systems (EPaCCS). METHODS: We searched CINAHL, MEDLINE, Embase, the Cochrane Library and grey literature for 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. RESULTS: 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. CONCLUSIONS: 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.