Palliative Care and Oncology Survey on Terminology

NCT05871996 | Recruiting

• 1 other identifier: RS23-058
• Study Type: observational
• Target: 1,532
• Locations: 2 countries
• Sites: 3

Brief Summary

The term '"cancer survivors" is widely used but has different definitions. One definition describes "cancer survivors" as individuals from the time of diagnosis throughout their lives, which includes people living with cancer and people free of cancer. The views of some groups included in this definition of "cancer survivors" have rarely been assessed, including those with cancer on anticancer treatment and those known to palliative care. How they view these terms could have important implications for how they receive care services. This is an international multi-centre observational study. It aims to recruit patients internationally across Ireland and the United Kingdom. Participants known to cancer and/or palliative care hospital or hospice services as inpatients, outpatients or community patients will be asked to complete a survey during a one-off visit which should last under 30 minutes. The survey asks a series of questions to determine the perceptions of patients know to cancer and palliative care services about the terminologies used to describe them.

Conditions

Cancer

Keywords

Cancer Survivors; Palliative Care

Outcome Measures

Primary Outcomes (1)

• The proportion of individuals with cancer known to palliative care services (Group 1) and the proportion of individuals on anti-cancer treatment (Group 2) that would "moderately dislike" or "strongly dislike" being described as a cancer survivor.

  The proportion of individuals with cancer throughout the study known to palliative care services (Group 1), and the proportion of individuals with cancer throughout the study on anti-cancer treatment (Group 2), that would "moderately dislike" or "strongly dislike" being described as a cancer survivor. This is not assessing change between two time points in the study, but determining this outcome for the two Groups throughout the whole study.

  at study completion, an average of 1 year

Secondary Outcomes (7)

• The proportions of these groups (Group 1 and Group 2) that "moderately dislike" or "strongly dislike" being described as a patient, client, consumer, customer, service user, cancer patient, patient with cancer, and person living with cancer.

  at study completion, an average of 1 year

• The proportion of these groups (Group 1 and Group 2) that think the specific subgroups of patients with cancer should be known as "cancer survivors":

  at study completion, an average of 1 year

• The proportion of these groups (Group 1 and Group 2) that "moderately dislike" or "strongly dislike" the widely used definition of "cancer survivor".

  at study completion, an average of 1 year

• Any association between perception towards the term cancer survivor and phase of cancer illness, cancer diagnosis and performance status.

  at study completion, an average of 1 year

• Any association between perception towards the term cancer survivor and personal demographic details including country of residence, age, gender, marital status, educational attainment, and ethnicity.

  at study completion, an average of 1 year

Study Arms (2)

Group 1

Individuals with a diagnosis of cancer known to palliative care services. This group completes Case Report Form for Group 1.

Other: Palliative Care and Oncology Survey on Terminology (POST)

Group 2

Individuals with a diagnosis of cancer receiving anti-cancer treatment known to oncology services. This group completes Case Report Form for Group 2

Other: Palliative Care and Oncology Survey on Terminology (POST)

Interventions

Palliative Care and Oncology Survey on Terminology (POST) OTHER

Each group receives a survey to complete. The only difference between the two is the inclusion criteria; the surveys are the same.

Group 1; Group 2

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

Patients known to hospice inpatient units, community palliative care services, hospital palliative care teams and/or oncology services at specified hospices and cancer centres internationally will be invited to participate. Participants may be inpatients, outpatients or community patients associated with the study sites. Participants must meet all of the inclusion criteria for the study, and none of the exclusion criteria for the study. Convenience sampling will be undertaken. Potential participants will be identified by the clinical team. The clinical team will ask them if they would be interested in taking part in a study. If they agree, the research team will arrange to meet with the patient.

You may qualify if:

• Diagnosis of cancer
• Under the care of palliative care services as an inpatient, outpatient or community patient
• Age ≥18 years
• Able to speak / read English (enough to complete questionnaire)

You may not qualify if:

• Unable to provide consent
• Unable to complete questionnaire
• Group 2: Individuals with a diagnosis of cancer receiving anti-cancer treatment known to oncology services
• Diagnosis of cancer
• Under the care of oncology services and currently receiving an anticancer treatment regimen of any kind
• Age ≥18 years
• Able to speak / read English (enough to complete questionnaire)
• Unable to provide consent
• Unable to complete questionnaire

Sponsors & Collaborators

• Our Lady's Hospice and Care Services: lead
• Royal Surrey County Hospital NHS Foundation Trust: collaborator

Study Sites (3)

St Vincent's University Hospital

Dublin, County Dublin, D04 T6F4, Ireland

RECRUITING

Our Lady's Hospice & Care Services

Dublin, D6W RY72, Ireland

RECRUITING

Royal Surrey County Hospital

Guildford, Surrey, GU2 7XX, United Kingdom

NOT YET RECRUITING

Related Publications (5)

• Cheung SY, Delfabbro P. Are you a cancer survivor? A review on cancer identity. J Cancer Surviv. 2016 Aug;10(4):759-71. doi: 10.1007/s11764-016-0521-z. Epub 2016 Feb 11.

  PMID: 26868682 BACKGROUND

• Costa DSJ, Mercieca-Bebber R, Tesson S, Seidler Z, Lopez AL. Patient, client, consumer, survivor or other alternatives? A scoping review of preferred terms for labelling individuals who access healthcare across settings. BMJ Open. 2019 Mar 7;9(3):e025166. doi: 10.1136/bmjopen-2018-025166.

  PMID: 30850410 BACKGROUND

• Marzorati C, Riva S, Pravettoni G. Who Is a Cancer Survivor? A Systematic Review of Published Definitions. J Cancer Educ. 2017 Jun;32(2):228-237. doi: 10.1007/s13187-016-0997-2.

  PMID: 26854084 BACKGROUND

• Radbruch L, De Lima L, Knaul F, Wenk R, Ali Z, Bhatnaghar S, Blanchard C, Bruera E, Buitrago R, Burla C, Callaway M, Munyoro EC, Centeno C, Cleary J, Connor S, Davaasuren O, Downing J, Foley K, Goh C, Gomez-Garcia W, Harding R, Khan QT, Larkin P, Leng M, Luyirika E, Marston J, Moine S, Osman H, Pettus K, Puchalski C, Rajagopal MR, Spence D, Spruijt O, Venkateswaran C, Wee B, Woodruff R, Yong J, Pastrana T. Redefining Palliative Care-A New Consensus-Based Definition. J Pain Symptom Manage. 2020 Oct;60(4):754-764. doi: 10.1016/j.jpainsymman.2020.04.027. Epub 2020 May 6.

  PMID: 32387576 BACKGROUND

• Wee M, Dau H, Gastonguay L, De Vera MA. How do individuals with colorectal cancer perceive the term "cancer survivor": a cross-sectional survey. J Cancer Surviv. 2022 Apr;16(2):257-268. doi: 10.1007/s11764-021-01015-9. Epub 2021 Mar 11.

  PMID: 33709303 BACKGROUND

Related Links

• National Cancer Institute: Division of Cancer Control and Population Sciences. (2022, November). Office of survivorship definitions.

MeSH Terms

Conditions

Neoplasms

Interventions

Palliative Care

Intervention Hierarchy (Ancestors)

Patient Care; Therapeutics; Health Services; Health Care Facilities Workforce and Services

Study Officials

• Andrew N Davies, MBBS MSc MD

  Our Lady's Hospice & Care Services

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Amy GS Taylor, MBChB MRCP

CONTACT

4986243; ataylor@olh.ie

Andrew N Davies, MBBS MSc MD

CONTACT

4986235; ResearchTeam@olh.ie

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor Andrew Davies

Study Record Dates

• First Submitted: May 11, 2023
• First Posted: May 23, 2023
• Study Start: October 3, 2023
• Primary Completion: October 1, 2025
• Study Completion: October 1, 2025
• Last Updated: June 27, 2025

Record last verified: 2025-06

Locations

IE (2); GB (1)