Clinical trial · Observational
Palliative Care and Oncology Survey on Terminology
What do Individuals Known to Palliative Care and Oncology Services Think About the Terminology Used to Describe Them?
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
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
Conditions (1)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Cancer | Malignant Neoplasm | ALIAS | 0.90 |
Interventions
Interventions (1)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| Palliative Care and Oncology Survey on Terminology (POST) | Other | — | UNRESOLVED |
Design
Arms and outcomes
Arms (2)
- label
- Group 1
- description
- Individuals with a diagnosis of cancer known to palliative care services. This group completes Case Report Form for Group 1.
- interventionNames
- Other: Palliative Care and Oncology Survey on Terminology (POST)
- label
- Group 2
- description
- Individuals with a diagnosis of cancer receiving anti-cancer treatment known to oncology services. This group completes Case Report Form for Group 2
- interventionNames
- Other: Palliative Care and Oncology Survey on Terminology (POST)
Primary outcomes (1)
- 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.
- timeFrame
- at study completion, an average of 1 year
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
Group 1: Individuals with a diagnosis of cancer known to palliative care services 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) 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 Inclusion criteria: * 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
References
Publications (5)
- BACKGROUNDCheung 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
- BACKGROUNDCosta 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
- BACKGROUNDMarzorati 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
- BACKGROUNDRadbruch 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
- BACKGROUNDWee 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