Exploring and understanding the support and care needs of people living with advanced bowel cancer and their carers

ISRCTN ISRCTN80318573
DOI https://doi.org/10.1186/ISRCTN80318573
Integrated Research Application System (IRAS) 369447
Sponsor University of Liverpool
Funder North West Cancer Research
Submission date
10/08/2026
Registration date
28/08/2026
Last edited
28/08/2026
Recruitment status
Recruiting
Overall study status
Ongoing
Condition category
Cancer
Prospectively registered
Protocol
Statistical analysis plan
Results
Individual participant data
Record updated in last year

Plain English summary of protocol

Background and study aims
Advanced colorectal cancer can cause many physical, emotional and practical problems for patients and the people who care for them. However, not enough is known about the support that patients and carers need, or whether these needs vary between different groups of patients and different parts of Cheshire and Merseyside.
The ACRE study aims to understand the supportive care needs of people with advanced colorectal cancer and their carers. The study will also look at what support services are available, whether people can access them easily, and whether unmet support needs are linked to increased use of hospital services. The findings will help improve supportive care services for patients and carers across the region.

Who can participate?
1. Adults aged 18 years and over with advanced colorectal cancer living in Cheshire and Merseyside, including: 1.1. People whose cancer may be removable with surgery but who are considered too frail or unwell for an operation 1.2. People whose cancer has spread and who are receiving palliative treatment 1.3. People whose cancer has spread and who are not receiving palliative treatment
2. Adults aged 18 years and over who are caring for a patient who meets the above criteria
3. Healthcare professionals involved in the care of patients with advanced colorectal cancer, including surgeons, oncologists, palliative care doctors and specialist nurses

What does the study involve?
Patients who agree to take part will be asked to complete two questionnaires about their health, symptoms and support needs.
Carers who agree to take part will complete one questionnaire about their own support needs.
Around 100 patients and 100 carers will take part in the questionnaire part of the study. A smaller group of approximately 20 patients and 20 carers will then be invited to take part in an interview. These interviews will explore their experiences of living with advanced colorectal cancer, caring responsibilities, and access to support services.
Interviews can take place face to face, by telephone or online, depending on the participant's preference. Participants may choose to stop an interview, take a break or skip any question they do not wish to answer.

What are the possible benefits and risks of participating?
Participants may not receive any direct medical benefit from taking part. However, their experiences could help researchers understand what support patients and carers need and how services could be improved for future patients and families.
The study is considered low risk. Some people may find it upsetting to talk about their illness, care needs or personal experiences. If a participant becomes distressed, they can stop the questionnaire or interview at any time and can be directed to appropriate support services if needed.

Where is the study run from?
The study is coordinated by the University of Liverpool (UK)

When is the study starting and how long is it expected to run for?
September 2026 toFebruary 2028.

Who is funding the study?
The study is funded by North West Cancer Research (UK).

Who is the main contact?
Ms Dheepa Nair
dnair@liverpool.ac.uk

Contact information

Ms Dheepa Nair
Public, Scientific

Sherrington Building
University of Liverpool
Liverpool
L69 3GE
United Kingdom

ORCiD logoORCID ID 0009-0006-2426-2015
Phone +44 7552787168
Email dnair@liverpool.ac.uk
Mr Dale Vim
Principal investigator

Sherrington Building
University of Liverpool
Liverpool
L69 3GE
United Kingdom

Phone +44 1244 365000
Email dalevim@liverpool.ac.uk

Study information

Primary study designObservational
Observational study designCross sectional study
Participant information sheet 50065 ACRE Patient Information Sheet V1.2 10Jun2026.pdf
Scientific titleAssessing the Supportive Care needs of patients with advanced colorectal cancer (ACRE)
Study acronymACRE
Study objectives 1. Profile supportive care needs and variations in needs by patient group
2. Geographically map supportive care needs across the Cheshire and Merseyside region, identify variations between locations, and assess how these needs align with the availability and accessibility of existing healthcare services
3. Examine discrepancies between service availability and perceived access, and identify whether disparities exist between existing services and the experiences of patients and carers
4. Explore the relationship between unmet supportive care needs and secondary care utilisation, including whether greater levels of unmet need are associated with increased secondary care admissions
Ethics approval(s)

Not yet submitted

Health condition(s) or problem(s) studiedColorectal cancer
MethodologyA regional, multi-centre, cross-sectional study that will examine, map, describe and understand the patient experience at different stages and in different populations of patients with incurable colorectal cancer.
Using validated questionnaires 100 consenting patients will complete the EORTC-QLQ-CR29 and a MYMOP2 at baseline and 100 consenting caregivers will complete a CSNAT questionnaire. Approximately 40 participants thereafter (20 patients and 20 caregivers) will be invited to participate in semi-structured interviews.
Stakeholders (approximately 2 surgeons, 2 oncologists, 2 palliative care doctors, and 5 palliative care nurses or colorectal nurse specialists) will be invited to participate in semi-structured interviews or facilitated engagement discussions to explore how the needs of this patient population are perceived from an MDT perspective
Intervention typeOther
Primary outcome measure(s)
  1. The findings of this study should inform the design of supportive care services across Cheshire and Merseyside to benefit patients and their caregivers. measured using Qualitative Mixed Methods Study at 1.5 years
  2. Supportive care needs of patients with advanced colorectal cancer, including quality of life, symptom burden and patient-identified concerns measured using using validated questionnaires EORTC QLQ-CR29 and MYMOP2 questionnaires at baseline, with further exploration through semi-structured interviews analysed using reflexive thematic analysis following preliminary questionnaire analysis at baseline and throughout recruitment period (1 year)
Key secondary outcome measure(s)

1. Geographical variation in supportive care needs and alignment with available services across Cheshire and Merseyside measured through questionnaire data, demographic and postcode data, service utilisation records and qualitative interviews throughout the 1.5-year study period
2. Disparity between supportive care service availability and perceived access to those services measured through caregiver and patient interviews, clinician interviews, CSNAT responses and service referral data at baseline and throughout the 1.5-year study period
3. Caregiver supportive care needs measured using the CSNAT questionnaire and explored further through semi-structured caregiver interviews at baseline and throughout the 1-year interview process
4. Association between unmet supportive care needs and secondary healthcare utilisation measured using hospital admission data, referral data, and patient- and caregiver-reported outcomes throughout the 1.5-year study period
5. Healthcare professional perspectives regarding supportive care needs, service provision and barriers to access measured through semi-structured stakeholder interviews conducted during the qualitative phase of the study following completion of patient and caregiver interviews in the final 3 months of the study period

Completion date01/02/2028

Eligibility

Participant type(s)
Age groupMixed
Lower age limit18 Years
Upper age limit110 Years
SexAll
Target sample size at registration211
Key inclusion criteriaPatients:
1. Patients aged over 18 years with advanced (newly diagnosed and/or recurrent) colorectal cancer from the Cheshire and Merseyside region who belong to one of the following groups:
1.1. Those with potentially resectable cancer for whom surgery would be considered too high risk
1.2. Those with metastatic disease at presentation who are able to receive palliative treatment
1.3. Those with metastatic disease at presentation who are unable to receive palliative treatment
2. Carers aged over 18 years who are currently caring for a patient who meets the above criteria
3. Stakeholders with clinical experience in the care of patients with colorectal cancer, including:
3.1. Two colorectal surgical consultants
3.2. Two oncologists
3.3. Two palliative care doctors
3.4. Five palliative care or colorectal nurse specialists

Healthy volunteers are allowed

Carers over the age of 18 who are currently caring for a patient that fits the above criteria
Key exclusion criteriaDoes not meet inclusion criteria
Date of first enrolment01/09/2026
Date of final enrolment01/02/2028

Locations

Countries of recruitment

  • United Kingdom
  • England

Study participating centres

Clatterbridge Cancer Centre
Clatterbridge Hospital
Clatterbridge Road
Wirral
CH63 4JY
England
Liverpool University Hospitals NHS Foundation Trust
Royal Liverpool University Hospital
Prescot Street
Liverpool
L7 8XP
England
Warrington Hospital (site)
Warrington Hospital
Lovely Lane
Warrington
WA5 1QG
England
Arrowe Park Hospital (site)
Arrowe Park Hospital
Arrowe Park Road
Wirral
CH49 5PE
England
Countess of Chester Hospital NHS Foundation Trust
Countess of Chester Health Park
Liverpool Road
Chester
CH2 1UL
England
Mersey and West Lancashire Teaching Hospitals NHS Trust
Whiston Hospital
Warrington Road
Prescot
L35 5DR
England

Results and Publications

Individual participant data (IPD) Intention to shareNo

Study outputs

Output type Details Date created Date added Peer reviewed? Patient-facing?
Participant information sheet Carer
version 1.2
10/06/2026 11/08/2026 No Yes
Participant information sheet Patient
version 1.2
10/06/2026 11/08/2026 No Yes
Protocol file version 1.2 08/05/2026 11/08/2026 No No

Additional files

50065 ACRE Patient Information Sheet V1.2 10Jun2026.pdf
Patient
50065 ACRE Carer Information Sheet v1.2 10Jun2026.pdf
Carer
50065 ACRE Protocol V1.2 08May2026.pdf
Protocol file

Editorial Notes

28/08/2026: Trial's existence confirmed by University of Liverpool.