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.
- electronic health records
- advance care planning
- palliative care
- electronic palliative care coordination systems
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Contributors KES and IJH had the idea for the study. KES designed the study with input from JL, AW and IJH. Data search, screening, extraction and analysis were carried out by JL, KES and AW. All authors helped interpret the data. JL and KES wrote the first draft of the paper. All authors contributed to subsequent drafts and approved the final paper.
Funding KES is funded by a National Institute for Health Research (NIHR) Clinician Scientist Fellowship (CS-2015-15-005) and has received funding from the Academy of Medical Sciences (Starter Grant for Clinical Lecturers (AMS-SGCL10-Sleeman), supported by The Wellcome Trust, Medical Research Council, British Heart Foundation, Arthritis Research UK, the Royal College of Physicians and Diabetes UK). IJH holds an NIHR Emeritus Senior Investigator Award. AW is funded jointly by RM Partners, ULCH Cancer Collaborative, South East London ACN, Imperial BRC and RMH/ICR BRC. This paper presents independent research funded by the NIHR.
Disclaimer The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement The full dataset of papers is available from the corresponding author.
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