Palliative Care and Oncology Survey on Terminology (POST)
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. |
ClinicalTrials.gov Identifier: NCT05871996 |
Recruitment Status :
Recruiting
First Posted : May 23, 2023
Last Update Posted : November 2, 2023
|
- Study Details
- Tabular View
- No Results Posted
- Disclaimer
- How to Read a Study Record
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 3830 patients internationally across Australia, Canada, Ireland, the United Kingdom, and the United States of America. 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.
Condition or disease | Intervention/treatment |
---|---|
Cancer | Other: Palliative Care and Oncology Survey on Terminology (POST) |
Study Type : | Observational |
Estimated Enrollment : | 3830 participants |
Observational Model: | Other |
Time Perspective: | Cross-Sectional |
Official Title: | What do Individuals Known to Palliative Care and Oncology Services Think About the Terminology Used to Describe Them? |
Actual Study Start Date : | October 3, 2023 |
Estimated Primary Completion Date : | October 2024 |
Estimated Study Completion Date : | October 2024 |
Group/Cohort | Intervention/treatment |
---|---|
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)
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 |
Other: 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. |
- 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.
- 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 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.
- 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 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.
- 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 ]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.
- 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 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.
- 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 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.
- Any differences in the outcomes between the two Groups [ Time Frame: at study completion, an average of 1 year ]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.
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.
Ages Eligible for Study: | 18 Years and older (Adult, Older Adult) |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
Sampling Method: | Non-Probability Sample |
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
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT05871996
Contact: Amy GS Taylor, MBChB MRCP | 4986243 ext 0035301 | ataylor@olh.ie | |
Contact: Andrew N Davies, MBBS MSc MD | 4986235 ext 0035301 | ResearchTeam@olh.ie |
Ireland | |
St Vincent's University Hospital | Recruiting |
Dublin, County Dublin, Ireland, D04 T6F4 | |
Contact: Amy Taylor, MBChB +35314986243 ext 6243 ataylor@olh.ie | |
Our Lady's Hospice & Care Services | Recruiting |
Dublin, Ireland, D6W RY72 | |
Contact: Amy GS Taylor, MBChB 4986243 ext 0035301 ataylor@olh.ie | |
United Kingdom | |
Royal Surrey County Hospital | Not yet recruiting |
Guildford, Surrey, United Kingdom, GU2 7XX | |
Contact: Charlotte Leach charlotte.leach@nhs.net |
Principal Investigator: | Andrew N Davies, MBBS MSc MD | Our Lady's Hospice & Care Services |
Publications:
Responsible Party: | Prof Andrew Davies, Professor Andrew Davies, Our Lady's Hospice and Care Services |
ClinicalTrials.gov Identifier: | NCT05871996 |
Other Study ID Numbers: |
RS23-058 |
First Posted: | May 23, 2023 Key Record Dates |
Last Update Posted: | November 2, 2023 |
Last Verified: | October 2023 |
Individual Participant Data (IPD) Sharing Statement: | |
Plan to Share IPD: | Undecided |
Plan Description: | 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. |
Studies a U.S. FDA-regulated Drug Product: | No |
Studies a U.S. FDA-regulated Device Product: | No |
Cancer Survivors Palliative Care |