CancerPOSTNCT05871996
Palliative Care and Oncology Survey on Terminology
An observational study of Cancer, run by Our Lady's Hospice and Care Services at 3 sites in 2 countries.
Trial 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. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Cancer
- What is being tested?
- Palliative Care and Oncology Survey on Terminology (POST)
- How many people
- 1,532 participants
- Where
- 3 sitesin 2 countries
- Study dates
- 3 Oct 2023to Oct 2025
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
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.
Who may be able to join
- 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)
Who cannot join
- 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
Trial locations and contacts
3 sites in 2 countries. Contact the study team or a site near you to ask about taking part.
3 sites in 2 countries
Ireland2 sites, 2 recruiting
- Recruiting
St Vincent's University Hospital
Dublin, County Dublin, D04 T6F4
Amy Taylor, MBChB, +35314986243 ext. 6243, ataylor@olh.ie
- Recruiting
Our Lady's Hospice & Care Services
Dublin, D6W RY72
Amy GS Taylor, MBChB, 4986243 ext. 0035301, ataylor@olh.ie
United Kingdom1 site, 1 recruiting
- Not yet recruiting
Royal Surrey County Hospital
Guildford, Surrey, GU2 7XX
Charlotte Leach, charlotte.leach@nhs.net
About this study
Official title: What do Individuals Known to Palliative Care and Oncology Services Think About the Terminology Used to Describe Them?
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.
Read the detailed description
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
- Cancer
- Being tested
- Palliative Care and Oncology Survey on Terminology (POST)
- Keywords
- Cancer Survivors, Palliative Care
- Medical subject headings
- Neoplasms
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
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.
| Study group | Role | What they receive |
|---|---|---|
| Group 1 | Individuals with a diagnosis of cancer known to palliative care services. This group completes Case Report Form for Group 1. Receives: 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 Receives: Other: Palliative Care and Oncology Survey on Terminology (POST) |
What is being measured
The primary outcome is the main question the study is designed to answer.
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.
Measured: 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.
The proportions of these groups of individuals (Group 1 and Group 2) throughout the study 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. This is not assessing change between two time points in the study, but determining this outcome for the two Groups throughout the whole study.
Measured: 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":
The proportion of these groups of individuals (Group 1 and Group 2) throughout the study that think the specific subgroups of patients with cancer should be known as "cancer survivors". This is not assessing change between two time points in the study, but determining this outcome for the two Groups throughout the whole study.
Measured: 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".
The proportion of these groups of individuals (Group 1 and Group 2) throughout the study that "moderately dislike" or "strongly dislike" the widely used definition of "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.
Measured: 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.
Any association between perception towards the term cancer survivor and phase of cancer illness, cancer diagnosis and performance status. This is not assessing change between two time points in the study, but determining this outcome for the participants throughout the whole study.
Measured: 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.
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. This is not assessing change between two time points in the study, but determining this outcome for the participants throughout the whole study.
Measured: at study completion, an average of 1 year
Any differences in the outcomes between the two Groups
Any differences in the outcomes between the two Groups. This is not assessing change between two time points in the study, but determining differences in the outcomes above between the two Groups, determined from data collected throughout the whole study.
Measured: at study completion, an average of 1 year
The perception / understanding of people with cancer about the term "cancer survivor"
Participants provide free text comments relating to "cancer survivor" at the end of the questionnaire.
Measured: At study completion / data saturation
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted23 May 2023
- Study start3 Oct 2023
- Primary completionOct 2025 (estimated)
- Study completionOct 2025 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (5)Papers the sponsor has linked to this study.
- Other trials for CancerStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Cross-sectional
- Enrolment
- 1,532 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Our Lady's Hospice and Care Services
- Sponsor type
- University, hospital or other
- Collaborators
- Royal Surrey County Hospital NHS Foundation Trust
- Responsible party
- Principal investigator, Prof Andrew Davies, Our Lady's Hospice and Care Services
- Investigators
- Andrew N Davies, MBBS MSc MD, Principal investigator, Our Lady's Hospice & Care Services
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05871996
- Sponsor's protocol ID
- RS23-058
- Acronym
- POST
- Status last verified
- Jun 2025
- First submitted
- 11 May 2023
- Last updated
- 27 Jun 2025
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided: Participants are asked to consent to the following: If you agree, the information we collect for this study may be provided to researchers running related research studies. This may be in this organisation, or other organisations, including universities, or healthcare institutions involved in research. Your information will only be used for research relating to the terminologies used to describe individuals who use healthcare services. Any information shared for future research will not identify you and cannot be used to contact you. The information will only be used for the purpose of research.
Publications
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.
PubMed 26868682Costa 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.
PubMed 30850410Marzorati 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.
PubMed 26854084Radbruch 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.
PubMed 32387576Wee 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.
PubMed 33709303
Study at a glance
From the registry record, last updated by the sponsor on 27 Jun 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- What do Individuals Known to Palliative Care and Oncology Services Think About the Terminology Used to Describe Them?
- ClinicalTrials.gov ID
- NCT05871996
- Acronym / sponsor ID
- POST / RS23-058
- Conditions
- Cancer
- Keywords
- Cancer Survivors, Palliative Care
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 1,532 participants (estimated)
- Lead sponsor
- Our Lady's Hospice and Care ServicesUniversity, hospital or other
- Collaborators
- Royal Surrey County Hospital NHS Foundation Trust
- Study start
- 3 Oct 2023 (actual)
- Primary completion
- Oct 2025 (estimated)
- Study completion
- Oct 2025 (estimated)
- First posted
- 23 May 2023 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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
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.
Study design
- Observational model
- Other
- Time perspective
- Cross-sectional
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Group 1 | – | Other: Palliative Care and Oncology Survey on Terminology (POST)Individuals with a diagnosis of cancer known to palliative care services. This group completes Case Report Form for Group 1. |
| Group 2 | – | Other: Palliative Care and Oncology Survey on Terminology (POST)Individuals with a diagnosis of cancer receiving anti-cancer treatment known to oncology services. This group completes Case Report Form for Group 2 |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- 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.
Key inclusion criteria (8 listed)
- 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
Key exclusion criteria (5 listed)
- 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
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| 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. | Other | Group 1, Group 2 |
Primary outcome
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.
Time frame: at study completion, an average of 1 year
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.
7 secondary outcomes
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.
Time frame: 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":
Time frame: 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".
Time frame: 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.
Time frame: 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.
Time frame: at study completion, an average of 1 year
Any differences in the outcomes between the two Groups
Time frame: at study completion, an average of 1 year
The perception / understanding of people with cancer about the term "cancer survivor"
Time frame: At study completion / data saturation
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 27 Jun 2025.
- Background: PubMed 26868682Cheung 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.
- Background: PubMed 30850410Costa 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.
- Background: PubMed 26854084Marzorati 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.
- Background: PubMed 32387576Radbruch 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.
- Background: PubMed 33709303Wee 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.
- National Cancer Institute: Division of Cancer Control and Population Sciences. (2022, November). Office of survivorship definitions.Link provided by the sponsor.
- Individual participant dataSharing planned: Undecided. Participants are asked to consent to the following: If you agree, the information we collect for this study may be provided to researchers running related research studies. This may be in this organisation, or other organisations, including universities, or healthcare institutions involved in research. Your information will only be used for research relating to the terminologies used to describe individuals who use healthcare services. Any information shared for future research will not identify you and cannot be used to contact you. The information will only be used for the purpose of research.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Andrew N Davies, MBBS MSc MD principal investigator
Our Lady's Hospice & Care Services
3 sites in 2 countries: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Cancer, run by Our Lady's Hospice and Care Services at 3 sites in 2 countries.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 8 inclusion and 5 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 27 Jun 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 3 sites in Ireland, United Kingdom. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Amy GS Taylor, MBChB MRCP (4986243 ext. 0035301, ataylor@olh.ie), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
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. (time frame: at study completion, an average of 1 year). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT05871996, which also lists 5 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 27 Jun 2025.