Study Results
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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RECRUITING
1532 participants
OBSERVATIONAL
2023-10-03
2025-10-31
Brief Summary
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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.
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Detailed Description
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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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Study Design
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OTHER
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)
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)
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.
Eligibility Criteria
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Inclusion Criteria
* 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 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
18 Years
ALL
No
Sponsors
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Royal Surrey County Hospital NHS Foundation Trust
OTHER
Our Lady's Hospice and Care Services
OTHER
Responsible Party
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Prof Andrew Davies
Professor Andrew Davies
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
Our Lady's Hospice & Care Services
Dublin, , Ireland
Royal Surrey County Hospital
Guildford, Surrey, United Kingdom
Countries
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Central Contacts
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Facility Contacts
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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.
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.
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.
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.
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.
Related Links
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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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