Personalised Cancer Care and Support: Identifying What Good Looks Like

NCT05702684 | Completed

• 1 other identifier: 312083
• Study Type: observational
• Target: 76
• Locations: 1 country
• Sites: 1

Brief Summary

The overarching aim is to study the coproduction of personalised care in a digital age by seeking to improve the experience of care and personalised care and support planning for people who live with and beyond colorectal cancer. This study will assess digital health contributions to personalised care and explore how to improve the quality of collaborative digital care planning in cancer services. The electronic holistic needs assessment (eHNA) developed by Macmillan Cancer Support (macmillan.org.uk/healthcare-professionals/innovation-in-cancer-care/holistic-needs-assessment/sign-up-to-ehna) will be used as a case study to help advance this aspect of healthcare improvement studies. The primary objective is to gain a better understanding of how personalised care and support planning in the form of the eHNA and consultation works (or not) from the perspectives of people who are living with and beyond colorectal cancer, and clinicians. The secondary objectives are to: i. identify what good practice looks like for digital personalised care and support planning in a specific tumour group (colorectal) and at a point in the cancer pathway (within 31 days of diagnosis) ii. explore if the ARC framework can be used to inform personalised cancer care and support planning The research will review current practice and focus on identifying what good looks like for digital cancer care planning. It will go on to explore how what we know about LWBC can be used to inform the co-design of digital care planning that better supports personalised long-term cancer care. From the outset, this early work will help to inform future issues around generalisability and scaling-up.

Conditions

Colorectal Cancer

Outcome Measures

Primary Outcomes (1)

• Patient experience

  Improved experience of care as measured through video-reflexive ethnography processes

  Through study completion up to 12 months

Study Arms (2)

People living with colorectal cancer

Patients (who are living with colorectal cancer) who have agreed to complete the eHNA intervention (within 31 days of diagnosis) and care planning consultation and clinicians who work in cancer services and provide the eHNA intervention to patients who are living with colorectal cancer

Other: electronic Holistic Needs Assessment (eHNA)

People living with treatable-but-not-curable cancer

Patients who have received the ARC Holistic Needs Assessment (HNA) intervention from the ARC clinic and clinicians responsible for developing/delivering the ARC HNA intervention.

Other: electronic Holistic Needs Assessment (eHNA)

Interventions

electronic Holistic Needs Assessment (eHNA) OTHER

eHNA to be completed within 31 days of diagnosis (standard care). ARC clinic previously offered 6-24 months post-diagnosis.

Also known as: ARC clinic

People living with colorectal cancer; People living with treatable-but-not-curable cancer

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

The study will focus on colorectal (including metastatic disease but not end of life) cancer. This group of patients have immediate needs (i.e., body image, disruption in life), and require ongoing treatment (up to 15 years of treatment options). This tumour group also has a fairly equal age and gender distribution and is underrepresented in research (Sun et al., 2021). Changes to colorectal cancer care delivery during the COVID-19 pandemic have also shown to increase healthcare inequalities (Ip et al., 2022). The study will focus on the eHNA process at diagnosis (within 31 days of diagnosis) because this is already a focus for services in terms of meeting NHS England key performance indicators.

You may qualify if:

• Patients
• Patients (who are living with and beyond colorectal cancer) who have agreed to complete the eHNA intervention within 31 days of diagnosis OR patients who received the ARC clinic HNA intervention.
• Over 18 years of age
• Speak a conversational level of English Patients will be sampled purposively to ensure a range of experiences. Patients will be sampled on ethnicity, gender, age, time since diagnosis, socio-economic status, and digital maturity, so that findings can also be used to explore and address cancer inequalities.
• Paired clinicians
• Clinicians (e.g., CNS, AHP, cancer support worker) who work in cancer services and provide the eHNA/ARC intervention to (the recruited) patients who are living with colorectal cancer.
• Over the age of 18
• Speak a conversational level of English.
• Team members
• Clinicians (e.g., CNS, AHP, cancer support worker) who work in the colorectal cancer team or who work in close liaison with the colorectal cancer team and are responsible for providing the eHNA and care planning consultation.
• Over the age of 18
• Speak a conversational level of English.

You may not qualify if:

• Patients
• Patients (who are living with and beyond cancer) who are receiving treatment but who have not agreed to complete an eHNA /patients who did not attend the ARC clinic.
• Under 18 years of age
• Do not speak a conversational level of English
• Patients who lack capacity to consent
• Paired Clinicians 1. Clinicians who do not provide the eHNA intervention /ARC intervention to patients who are living with and beyond cancer.
• Team members
• \. Clinicians (e.g., CNS, AHP, cancer support worker) who do not work in the colorectal cancer team or in close liaison with the colorectal cancer team.

Sponsors & Collaborators

• King's College London: lead

Study Sites (1)

Guy's & St Thomas' NHS Foundation Trust

London, United Kingdom

Location

Related Publications (5)

• Carroll K, Mesman J. Multiple Researcher Roles in Video-Reflexive Ethnography. Qual Health Res. 2018 Jun;28(7):1145-1156. doi: 10.1177/1049732318759490. Epub 2018 Feb 24.

  PMID: 29478407 BACKGROUND

• Wyer M, Jackson D, Iedema R, Hor SY, Gilbert GL, Jorm C, Hooker C, O'Sullivan MV, Carroll K. Involving patients in understanding hospital infection control using visual methods. J Clin Nurs. 2015 Jun;24(11-12):1718-29. doi: 10.1111/jocn.12779. Epub 2015 Feb 7.

  PMID: 25662176 BACKGROUND

• Iedema R. Research paradigm that tackles the complexity of in situ care: video reflexivity. BMJ Qual Saf. 2019 Feb;28(2):89-90. doi: 10.1136/bmjqs-2018-008778. Epub 2018 Oct 11. No abstract available.

  PMID: 30309911 BACKGROUND

• Varpio L, Ajjawi R, Monrouxe LV, O'Brien BC, Rees CE. Shedding the cobra effect: problematising thematic emergence, triangulation, saturation and member checking. Med Educ. 2017 Jan;51(1):40-50. doi: 10.1111/medu.13124.

  PMID: 27981658 BACKGROUND

• Iedema RA, Angell B. What are patients' care experience priorities? BMJ Qual Saf. 2015 Jun;24(6):356-9. doi: 10.1136/bmjqs-2015-004298. Epub 2015 May 13. No abstract available.

  PMID: 25972222 BACKGROUND

MeSH Terms

Conditions

Colorectal Neoplasms

Condition Hierarchy (Ancestors)

Intestinal Neoplasms; Gastrointestinal Neoplasms; Digestive System Neoplasms; Neoplasms by Site; Neoplasms; Digestive System Diseases; Gastrointestinal Diseases; Colonic Diseases; Intestinal Diseases; Rectal Diseases

Study Officials

• Clair Le Boutillier

  King's College London

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: OTHER
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 9, 2023
• First Posted: January 27, 2023
• Study Start: July 31, 2023
• Primary Completion: December 12, 2025
• Study Completion: December 12, 2025
• Last Updated: February 12, 2026

Record last verified: 2025-12

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)