Palliative Care and Oncology Survey on Terminology

NCT ID: NCT05871996

Last Updated: 2025-06-27

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

1532 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-10-03

Study Completion Date

2025-10-31

Brief Summary

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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.

Detailed Description

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Despite widespread use of the term "cancer survivor", its meaning is not standardised or universally understood. The most widely used definition incorporates individuals from the time of diagnosis throughout their lives, which includes people living with cancer and people free of cancer. The National Cancer Institute (NCI) (2022) subscribes to this description, and divides survivorship into three phases: individuals with early-stage cancer where the goal is curative intent, individuals with advanced or metastatic cancer where the goal is to prolong life, and individuals with end-stage cancer where the goal is end-of-life care. It presents these as a continuum. It has been suggested that the term, "cancer survivor," is not designed to be a label, but rather to describe a population of people who have a history of cancer (NCI, 2022), recognising that the heterogeneous group encompassed by this term may not all subscribe to it. The perception of patients towards "cancer survivor" in their context has been sought for a variety of groups, generally including patients without progressive disease who have completed treatment, or those undergoing treatment. These individuals have various attitudes towards their inclusion in the term, with some considering it inappropriate, and others finding the group too diverse to be acceptable. One group may be patients known to palliative care services. Palliative care aims to provide holistic care for individuals with health-related suffering due to severe illness to improve the quality of life of patients, their families and caregivers, particularly at the end of life. These patients also fit the definition of 'cancer survivors' using the NCI's definition. There is a particular paucity of evidence on their opinion on survivorship terminology, which may have important implications for patients' receipt of care and the adoption and understanding of this terminology within palliative care services.

The aim of this study is to determine the perceptions of heterogeneous groups of patients known to oncology and palliative care services regarding the terminologies used to describe them, and in particular the term "cancer survivor." This is an international, multicentre, observational study. The study will seek participants known to oncology and palliative care services in 2 target groups in Ireland and the United Kingdom (UK). The overall lead investigator of the study will be based in Our Lady's Hospice \& Care Services, Dublin, Ireland. Each country will have a national site lead who will obtain ethical approval and manage patient recruitment within their country. The overall Principal Investigator (PI) and his research team will lead recruitment in Ireland and overall governance for the study. Established researchers will be identified to lead the project in the UK. They will be required to identify local sites, obtain local ethical / research approval, and provide local support to the overall PI and research team. The study will recruit 383 individuals in Groups 1 and 2 in each area i.e., 766 individuals for each Group, and 1532 individuals overall.

The study involves a single assessment, which should take 15-30 minutes (and involves completion of a study-specific English-language questionnaire). Case Record Forms (CRFs) will be amended for each country relating to local specifications for education and ethnicity. There will be 2 sections - a researcher section and a participant section, consisting of 3 parts, to complete. Data will be recorded on paper CRFs and transferred onto a secure online platform.

The study will conform to the General Data Protection Regulations (GDPR) (2018) and equivalent legislation in the different countries. All data will be treated as confidential, and data will be pseudonymised to protect the participants' identities. Descriptive statistics will be used to describe individual country data. Quantitative data analysis will be carried out using SPSS software and appropriate statistical tests. Qualitative analysis of free text comments will be carried out through coding using Microsoft Excel.

The study will be conducted in accordance with the Declaration of Helsinki, and the International Conference on Harmonisation guidance on Good Clinical Practice. Investigators are responsible for ensuring that appropriate ethical (and other necessary) approvals are in place before the study commences at their study site. The study is considered low risk, and not burdensome for participants.

Conditions

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Cancer

Study Design

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Observational Model Type

OTHER

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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Group 1

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

Palliative Care and Oncology Survey on Terminology (POST)

Intervention Type OTHER

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

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

Palliative Care and Oncology Survey on Terminology (POST)

Intervention Type OTHER

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

Interventions

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Palliative Care and Oncology Survey on Terminology (POST)

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

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* 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)


* 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)

Exclusion Criteria

* Unable to provide consent
* Unable to complete questionnaire

Group 2: Individuals with a diagnosis of cancer receiving anti-cancer treatment known to oncology services


* Unable to provide consent
* Unable to complete questionnaire
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Royal Surrey County Hospital NHS Foundation Trust

OTHER

Sponsor Role collaborator

Our Lady's Hospice and Care Services

OTHER

Sponsor Role lead

Responsible Party

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Prof Andrew Davies

Professor Andrew Davies

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Andrew N Davies, MBBS MSc MD

Role: PRINCIPAL_INVESTIGATOR

Our Lady's Hospice & Care Services

Locations

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St Vincent's University Hospital

Dublin, County Dublin, Ireland

Site Status RECRUITING

Our Lady's Hospice & Care Services

Dublin, , Ireland

Site Status RECRUITING

Royal Surrey County Hospital

Guildford, Surrey, United Kingdom

Site Status NOT_YET_RECRUITING

Countries

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Ireland United Kingdom

Central Contacts

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Amy GS Taylor, MBChB MRCP

Role: CONTACT

4986243 ext. 0035301

Andrew N Davies, MBBS MSc MD

Role: CONTACT

4986235 ext. 0035301

Facility Contacts

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Amy Taylor, MBChB

Role: primary

+35314986243 ext. 6243

Amy GS Taylor, MBChB

Role: primary

4986243 ext. 0035301

Charlotte Leach

Role: primary

References

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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.

Reference Type BACKGROUND
PMID: 26868682 (View on PubMed)

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.

Reference Type BACKGROUND
PMID: 30850410 (View on PubMed)

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.

Reference Type BACKGROUND
PMID: 26854084 (View on PubMed)

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.

Reference Type BACKGROUND
PMID: 32387576 (View on PubMed)

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.

Reference Type BACKGROUND
PMID: 33709303 (View on PubMed)

Related Links

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http://cancercontrol.cancer.gov/ocs/definitions

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

Other Identifiers

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RS23-058

Identifier Type: -

Identifier Source: org_study_id

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