Anticipatory care planning in primary care for people living at home or in a care home

ISRCTN ISRCTN54516639
DOI https://doi.org/10.1186/ISRCTN54516639
IRAS number 291779
Secondary identifying numbers IRAS 291779
Submission date
12/04/2022
Registration date
13/04/2022
Last edited
17/01/2025
Recruitment status
No longer recruiting
Overall study status
Completed
Condition category
Other
Prospectively registered
Protocol
Statistical analysis plan
Results
Individual participant data

Plain English summary of protocol

Background and study aims
This research looks at improving care planning in the community for people living at home or in a care home. It will help more people talk with professionals and make a personal care plan.
‘What matters to me’ is central to planning care and shared decision-making with people and their families. Care planning aims to help people get the right treatment and care in line with how they would like looked after. People with long-term health problems or a serious illness can get ill suddenly and need urgent care. Some may die from these conditions, or other illnesses including coronavirus. They often lack an up to date plan for complications or changes in their health and care. While the NHS and social care continue to deal with COVID-19 and try to maintain other health and care services, people-centred care planning really matters. Better ways to do personal care planning will have longer-term benefits too.

Who can participate?
Patients, care home residents, families and primary care teams in up to 24 GP practices in four Scottish Health Boards

What does the study involve?
This study looks at four actions needed for good care planning:
1. GP practice records are searched regularly to help primary care teams find people who could benefit from care planning, extra support, and in some cases - palliative care.
2. GP practice teams prioritise people and families with the greatest needs.
3. GPs, nurses or senior care home staff have individual care planning discussions with people at home or in a care home and/or those close to them.
4. Care plans agreed with the person (or proxy) and shared with health and care professionals in the community and hospitals via a secure electronic record system.

What are the possible benefits and risks of participating?
For the GP surgeries taking part, there is the benefit of additional tools and resources to assist them in conducting anticipatory care planning: a core part of their work. There are no discernible risks but there will be some administrative overhead. For patients, carers and professionals taking part in the interviews there are no direct, personal benefits or identifiable risks of taking part.

Where is the study run from?
The University of Edinburgh (UK)

When is the study starting and how long is it expected to run for?
November 2020 to November 2023

Who is funding the study?
Marie Curie (UK)

Who is the main contact?
Dr Kirsty Boyd
kirsty.boyd@ed.ac.uk

Study website

Contact information

Dr Kirsty Boyd
Principal Investigator

Doorway 3
Teviot Place
CPHS
Edinburgh
Eh8 9AG
United Kingdom

ORCiD logoORCID ID 0000-0002-5526-1078
Phone +44 (0)131 650 9237
Email kirsty.boyd@ed.ac.uk
Dr Bruce Mason
Scientific

Doorway 3
Teviot Place
CPHS
Edinburgh
EH8 9AG
United Kingdom

ORCiD logoORCID ID 0000-0002-9304-3362
Phone +44 (0)131 650 9237
Email bruce.mason@ed.ac.uk

Study information

Study designMulti-centre mixed-methods implementation study with qualitative evaluation
Primary study designInterventional
Secondary study designNon randomised study
Study setting(s)GP practice
Study typeScreening
Participant information sheet https://www.ed.ac.uk/sites/default/files/atoms/files/4acp_participant_information_sheet_v2_2022_02_22_0.pdf
Scientific titleImplementation of an integrated care planning and electronic care coordination intervention in primary care for people living at home or in a care home at risk of deteriorating or dying: a mixed-method study across Scotland (4-ACP)
Study acronym4-ACP
Study objectivesThe aim is to implement anticipatory care planning in the community provided by primary care teams for people living at home or in a care home across Scotland using the 4ACP process in a sample of GP surgeries in four diverse regions of Scotland.
Ethics approval(s)Approved 18/02/2022, South East Scotland Research Ethics Committee 02 (2nd Floor, Waverley Gate, 2-4 Waterloo Place, Edinburgh, EH1 3EG, UK; +44 (0)131 536 9000; sandra.wyllie@nhslothian.scot.nhs.uk), ref 22/SS/0017
Health condition(s) or problem(s) studiedAdvance/anticipatory care planning for people at risk of serious illness or death due to a pre-existing long-term condition or frailty
InterventionAs an implementation study, the intervention treats GP surgeries as the "participants" in the intervention. A package of support materials (4-ACP) is made available to participating GP surgeries to use in assisting screening, identification and conduct of anticipatory care planning. Participating GP surgeries will be convenience-sampled based on expressions of interest and recommendations from the four GP leads. There is no randomisation involved in this process. Each GP surgery will make use of the 4-ACP toolkit, including running the screening tool AnticiPal for up to 12 weeks.
Intervention typeMixed
Primary outcome measurePatient and/or linked informal carer attitude about the acceptability of anticipatory care planning (ACP), assessed using qualitative interviews at two timepoints within 6 and 12 weeks of having an ACP conversation. Inductive thematic analysis is used to determine qualitative content.
Secondary outcome measuresThere are no secondary outcome measures
Overall study start date01/11/2020
Completion date30/11/2023

Eligibility

Participant type(s)Mixed
Age groupMixed
Lower age limit16 Years
SexBoth
Target number of participantsUp to 24 GP surgeries, up to 30-40 patients/proxies plus any linked carers, up to 24 professionals
Total final enrolment34
Key inclusion criteriaGP surgeries participating in the implementation:
1. Located in one of the four participating health boards
2. Currently delivers anticipatory care planning

Patients taking part in qualitative interviews to evaluate the impact of anticipatory care planning:
1. Registered with participating practices
2. Has had an ACP conversation at the participating practice within the last 6 months or is a proxy for someone who has
3. Adult (over the age of 16 years)
4. Has the capacity to consent

Healthcare professionals taking part in qualitative interviews:
1. Working at a participating GP surgery
2. Has the capacity to consent
Key exclusion criteriaFor participating practices there are no exclusion criteria

For individuals:
1. Lacking the ability to consent
2. Lacking the ability to communicate
3. Interview considered physically or emotional risky by a healthcare professional with knowledge of the patient
4. Interview considered potentially risky to the researcher by a healthcare professional with knowledge of the patient
5. Participant under the age of 16 years
Date of first enrolment01/09/2022
Date of final enrolment30/09/2023

Locations

Countries of recruitment

  • Scotland
  • United Kingdom

Study participating centres

NHS Lothian
Waverley Gate
2-4 Waterloo Place
Edinburgh
EH1 3EG
United Kingdom
NHS Greater Glasgow and Clyde
J B Russell House
Gartnavel Royal Hospital
1055 Great Western Road Glasgow
Glasgow
G12 0XH
United Kingdom
NHS Highland
Reay House
17 Old Edinburgh Road
Inverness
IV2 3HG
United Kingdom
NHS Forth Valley
33 Spittal Street
Stirling
FK8 1DX
United Kingdom

Sponsor information

University of Edinburgh
University/education

Old College
South Bridge
Edinburgh
EH8 9YL
Scotland
United Kingdom

Phone +44 (0)131 650 1000
Email Neil.Mitchell@ed.ac.uk
Website http://www.ed.ac.uk/home
ROR logo "ROR" https://ror.org/01nrxwf90
NHS Lothian
Hospital/treatment centre

47 Little France Crescent
Edinburgh
EH16 4TJ
Scotland
United Kingdom

Phone +44 (0)1312429261
Email accord@nhslothian.scot.nhs.uk
Website http://www.nhslothian.scot.nhs.uk/Pages/default.aspx
ROR logo "ROR" https://ror.org/03q82t418

Funders

Funder type

Charity

Marie Curie
Private sector organisation / Other non-profit organizations
Alternative name(s)
Marie Curie Cancer Care
Location
United Kingdom

Results and Publications

Intention to publish date31/08/2024
Individual participant data (IPD) Intention to shareYes
IPD sharing plan summaryAvailable on request
Publication and dissemination planPlanned publications in high-impact journals in three areas:
1. Scoping review or anticipatory/advance care planning (ACP)
2. Content analysis of ACP information online hosted by national bodies
3. Evaluation of the 4-ACP Implementation
IPD sharing planThe datasets generated during and/or analysed during the current study are/will be available upon request from the project's chief investigator Dr Kirsty Boyd for up to 7 years from conclusion of the study.

Study outputs

Output type Details Date created Date added Peer reviewed? Patient-facing?
Other publications Online public information about advance care planning: An evaluation of UK and international websites 07/08/2024 Yes No
Other publications Scoping review 07/08/2024 Yes No
Basic results 28/12/2024 17/01/2025 No No

Additional files

ISRCTN54516639 Basic results summary 28Dec2024.pdf

Editorial Notes

17/01/2025: The basic results have been uploaded as an additional file.
07/08/2024: The following changes were made to the trial record:
1. Publication references added.
2. The total final enrolment was added.
06/02/2024: The following changes were made:
1. NHS Borders was removed and NHS Forth Valley was added as a study participating centre.
2. The overall study end date was changed from 31/10/2023 to 31/11/2023.
3. The intention to publish date has been changed from 31/12/2023 to 31/08/2024.
05/07/2023: The following changes were made to the study record:
1. The recruitment end date was changed from 30/04/2023 to 30/09/2023.
2. The overall study end date was changed from 30/07/2023 to 31/10/2023.
06/04/2023: The following changes have been made:
1. The recruitment end date has been changed from 30/03/2023 to 30/04/2023.
2. The overall trial end date has been changed from 30/06/2023 to 30/07/2023 and the plain English summary updated accordingly.
3. The intention to publish date has been changed from 31/07/2023 to 31/12/2023.
13/09/2022: The following changes were made to the trial record:
1. The recruitment start date was changed from 01/05/2022 to 01/09/2022.
2. The recruitment end date was changed from 30/09/2022 to 30/03/2023.
3. The overall trial end date was changed from 31/10/2022 to 30/06/2023.
4. The intention to publish date was changed from 31/10/2022 to 31/07/2023.
13/04/2022: Trial's existence confirmed by the South East Scotland Research Ethics Committee 02.