| Literature DB >> 36240254 |
Jacqueline Birtwistle1, Pablo Millares-Martin2, Catherine J Evans3, Robbie Foy1, Samuel Relton1, Suzanne Richards1, Katherine E Sleeman3, Maureen Twiddy4, Michael I Bennett1, Matthew J Allsop1.
Abstract
OBJECTIVES: In England, Electronic Palliative Care Coordination Systems (EPaCCS) were introduced in 2008 to support care coordination and delivery in accordance with patient preferences. Despite policy supporting their implementation, there has been a lack of rigorous evaluation of EPaCCS and it is not clear how they have been translated into practice. This study sought to examine the current national implementation of EPaCCS, including their intended impact on patient and service outcomes, and barriers and facilitators for implementation.Entities:
Mesh:
Year: 2022 PMID: 36240254 PMCID: PMC9565729 DOI: 10.1371/journal.pone.0275991
Source DB: PubMed Journal: PLoS One ISSN: 1932-6203 Impact factor: 3.752
Fig 1Status of EPaCCS implementation across England.
Key: Colour-coding relates to implementation status of EPaCCS across CCGs using green (operational), orange (in planning) and blue (no system present).
Fig 2Bar chart reflecting CCG reported access to EPaCCS by care setting.
Key: Percentage (%) reported access is derived from number of CCGs reporting access as a proportion of the number of CCGs providing a response. Of 57 respondents, 56 CCGs indicate a method of access for any of the services, with 23 CCGs providing data for some and not all health professional groups. In some CCGs, more than one method of sharing information was selected for the same service type. Data underpinning data in the graph can be found in S2 Table.
Intended impact of using EPaCCS and methods of measurement.
| Theme | Intended Impact | Number of responses | Total CCGs ( | |
|---|---|---|---|---|
| With EPaCCS ( | Planning | |||
|
| Timely access to documented and shared care plans and patient preferences for care | 28 (47) | 3 (25) | 31 (45) |
|
| Support coordination, continuity and delivery of patient-centred care between different health professionals and services. | 29 (49) | 9 (75) | 38 (55) |
|
| Improve identification of patients with palliative diagnosis and in last year of life | 4 (7) | 0 | 4 (6) |
|
| Improve experience of end-of-life care for families | 12 (20) | 1 (8) | 13 (19) |
|
| Increase likelihood of respecting patient wishes and priorities— | 40 (68) | 9 (75) | 49 (71) |
| Better conversations–( | 22 (37) | 2 (17) | 24 (35) | |
|
| ||||
| Concordance with patient stated preferences for place of care and death with attainment | 29 (50) | 9 (75) | 38 (55) | |
| Number of patients with an EPaCCS record | 11 (19) | - | 11 (16) | |
| Number of Hospital admissions and/or hospital attendances | 10 (18) | 5 (42) | 15 (22) | |
| Frequency of health professionals access to EPaCCS records | 6 (11) | - | 6 (9) | |
| Number of ambulance call-outs | 5 (9) | - | 5 (7) | |
| Completion of ACP information in EPaCCS records | 5 (9) | 1 (8) | 6 (9) | |
| Number of calls to community nurses or out of hours | 1 (2) | - | 1 (1) | |
|
| ||||
| Feedback or surveys from health professionals and/or patients and families | 20 (35) | 3 (25) | 23 (33) | |
| Comparative analyses or benchmarking between CCGs (e.g. comparison of EPaCCS records across general practices in a CCG, dashboard linking impact on indicators to outcomes) | 18 (32) | 3 (25) | 21 (30) | |
| Audit (e.g. case note review of patients’ EPaCCS data against the baselines and outcomes defined in local, regional and national standards, and retrospective death audits) | 10 (18) | 2 (16) | 12 (17) | |
| Case studies | 10 (18) | - | 10 (14) | |
* = No response from 1 CCG in planning. Counts represent the number of CCGs that mentioned each “impact” in the respective group for both those with EPaCCS and those with EPaCCS in planning. ‘-‘ indicates no data was provided for the category.
Fig 3Alignment of intended impact with measurement reported by survey respondents with an EPaCCS or with EPaCCS in planning.
Key: ‘High’ indicated that an appropriate range of measures were being used to measure the impact cited, including data on views, experiences or robust auditing methods linking individual patient outcomes to data. ‘Low’ indicated that methods had the potential to measure impact if being used robustly (e.g. on a patient by patient basis rather than aggregate routinely collected data). “Not measured’ indicated that no measure was reported. Alignment between intended impact and measures used is outlined in detail in S3 Table.
Challenges to implementation.
| With EPaCCS n(%) | Planning n(%) | Total | |
|---|---|---|---|
| Engagement with stakeholders (GPs) | 47 (82.5) | 8 (61.5) | 55 |
| Engagement with stakeholders (other) | 33 (57.9) | 4 (30.8) | 37 |
| Administration rights (i.e. issues with adding, administering or accessing records) | 22 (38.6) | 0 (0.0) | 22 |
| IT support | 18 (31.6) | 5 (38.5) | 23 |
| Training support | 16 (28.1) | 3 (23.1) | 19 |
| Patient consent | 14 (24.6) | 0 (0.0) | 14 |
| IT leadership | 14 (24.6) | 5 (38.5) | 19 |
| Clinical leadership | 12 (21.1) | 5 (38.5) | 17 |
Fig 4Boxplot outlining range of patients with EPaCCS at death.
Key: M = median. PPD = preferred place of death. Percentage for category using data provided for reported using available data only.
Summary of key findings and their implications.
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| • Digital approaches to facilitate the collection, recording and sharing of information to support palliative and end-of-life care delivery are being developed in countries including the UK, United States and Australia |
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| • There is considerable variation in how EPaCCS have been implemented across England |
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| • The proportion of people dying with an EPaCCS record does not meet conservative population-based estimates of palliative need, despite policy ambitions for EPaCCS to support early identification of patients |