Collaborative Cancer Resource – Patient Reported Experience Measure
Research type
Research Study
Full title
Developing a cancer psychosocial patient reported experience measure: A Collaborative Cancer Resource- Patient Reported Experience Measure (Co-CaRe-PREM)
IRAS ID
341790
Contact name
Research Integrity and Governance Office
Contact email
Sponsor organisation
University of Surrey
Duration of Study in the UK
0 years, 1 months, 16 days
Research summary
Cancer diagnosis, treatment and survivorship or palliative care can be psychologically demanding for patients with many reporting unmet psychosocial care needs. Meeting these needs can be stressful for clinicians and pressures from increased workloads/hybrid working due to COVID has led to higher job demands and stress. We are separately developing co-designed recommendations and resources to support staff in providing psychosocial care (IRAS ID: 324252). To support this we have adapted an existing patient reported experience measure (PREM, a type of questionnaire designed to measure patient experience) to be relevant for the outpatient cancer setting based on a review of the literature (manuscript in preparation), and feedback from staff stakeholders (local nursing, allied health professionals and medical staff).
The proposed study aims to pilot this adapted questionnaire for an initial assessment of its statistical performance and to gain feedback from patients on its acceptability and content (scope and comprehension).Lay Summary of Results
This study aimed to test a questionnaire which measured the mental, emotional and social aspects of patients experiences of their cancer care. The questionnaire had 21 items, and the response scale was rated ‘not at all’, ‘a little’, ‘quite a bit’ and ‘very much’. We wanted to collect feedback on the questionnaire’s content and ease of use, examine its statistical properties and improve it based on patient input. The questionnaire was tested using an online survey platform between June 2024-October 2024.
To take part patients had to have been diagnosed with any cancer and received NHS cancer care in the last 5 years at the Royal Surrey NHS Foundation Trust and be over 18 years.
In total 28 people participated. Half were female, their median age was 64.5 (range 43-79) and most described their ethnicity as White British/ English/ Welsh/ Scottish/ Northern Irish (N=23, 82%).
All participants answered all questions. The median time to complete the questionnaire was 5 minutes (range 2-15 minutes). Only 1 participant indicated that they needed help to complete the questionnaire; when prompted they indicated that their wife provided this help. Six respondents indicated that they found some questions confusing or difficult to answer. Free-text feedback detailed that patients felt an alternative response scale to include a ‘not applicable’ option would have been beneficial (N=3), that the scale did not correspond to their experiences (N=2) and that some questions seemed repetitive (N=1).
Nearly all participants (N=27, 96%) provided feedback on the questionnaire (96%). Most found the questions relevant (22, 79%) and were satisfied with the support information available when completing the survey (22, 78%), ease of use 24 (89%) and completion time (24, 89%).
Has the registry been updated to include summary results?: No
If yes - please enter the URL to summary results:
If no – why not?: Not a registry database
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Pending
If yes, describe or provide URLs to disseminated materials:
If pending, date when dissemination is expected: 31/03/2025
If no, explain why you didn't follow it:
Have participants been informed of the results of the study?: No
If yes, describe and/or provide URLs to materials shared and how they were shared:
If pending, date when feedback is expected:
If no, explain why they haven't: As the questionnaire was anonymous it is not be possible to inform participants of the results.
Have you enabled sharing of study data with others?: No
If yes, describe or provide URLs to how it has been shared: Sharing of findings will be achieved through reports of the study findings
If no, explain why sharing hasn't been enabled: This was not included in the study protocol.
Have you enabled sharing of tissue samples and associated data with others?: No
If yes, describe or provide a URL:
If no, explain why: No tissue samples were collected.REC name
London - Surrey Borders Research Ethics Committee
REC reference
24/PR/0379
Date of REC Opinion
19 Apr 2024
REC opinion
Favourable Opinion