Cancer Loyalty Card Study (CLOCS): feasibility outcomes for an observational case-control study focusing on the patient interval in ovarian cancer
File(s)
Published version
Author(s)
Type
Journal Article
Abstract
Objectives: Ovarian cancer symptoms are often non‐specific and can be normalised before patients seek medical help. The Cancer Loyalty Card Study (CLOCS) investigated self‐management behaviours of ovarian cancer patients prior to their diagnosis using loyalty
card data collected by two United Kingdom (UK)‐based high street retailers. Here, we discuss the feasibility outcomes for this novel research.
Design: Observational case‐control study.
Setting: Control participants were invited to the study using social media and other sources from the general public. Once consented, control participants were required to submit proof of identification (ID) for their loyalty card data to be shared. Cases were identified
using unique National Health Service (NHS) numbers (a proxy for ID) and were recruited through 12 NHS tertiary care clinics.
Participants: Women in the UK, 18 years or older, with at least one of the participating high street retailers’ loyalty cards. Those with an ovarian cancer diagnosis within two years of recruitment were considered cases, and those without an ovarian cancer diagnosis were considered controls.
Primary Outcome Measures: Recruitment rates, demographics of participants and identification of any barriers to recruitment.
Results: In total, 182 cases and 427 controls were recruited with significant differences by age, number of people in participants’ households and the geographical region in the UK. However, only 37% (n=160/427) of control participants provided sufficient ID details and
81% (130/160) matched retailers’ records. The majority of the participants provided complete responses to the 24‐Item Ovarian Risk Questionnaire.
Conclusions: Our findings show that recruitment to a study aiming to understand self‐care behaviours using loyalty card data is challenging but feasible. The general public were willing to share their data for health research. Barriers in data sharing mechanisms need to be addressed to maximise participant retention.
Trial registration: ISRCTN 14897082, CPMS 43323, NCT03994653.
card data collected by two United Kingdom (UK)‐based high street retailers. Here, we discuss the feasibility outcomes for this novel research.
Design: Observational case‐control study.
Setting: Control participants were invited to the study using social media and other sources from the general public. Once consented, control participants were required to submit proof of identification (ID) for their loyalty card data to be shared. Cases were identified
using unique National Health Service (NHS) numbers (a proxy for ID) and were recruited through 12 NHS tertiary care clinics.
Participants: Women in the UK, 18 years or older, with at least one of the participating high street retailers’ loyalty cards. Those with an ovarian cancer diagnosis within two years of recruitment were considered cases, and those without an ovarian cancer diagnosis were considered controls.
Primary Outcome Measures: Recruitment rates, demographics of participants and identification of any barriers to recruitment.
Results: In total, 182 cases and 427 controls were recruited with significant differences by age, number of people in participants’ households and the geographical region in the UK. However, only 37% (n=160/427) of control participants provided sufficient ID details and
81% (130/160) matched retailers’ records. The majority of the participants provided complete responses to the 24‐Item Ovarian Risk Questionnaire.
Conclusions: Our findings show that recruitment to a study aiming to understand self‐care behaviours using loyalty card data is challenging but feasible. The general public were willing to share their data for health research. Barriers in data sharing mechanisms need to be addressed to maximise participant retention.
Trial registration: ISRCTN 14897082, CPMS 43323, NCT03994653.
Date Issued
2023-06-14
Date Acceptance
2023-05-07
Citation
BMJ Open, 2023, 13 (6), pp.1-10
ISSN
2044-6055
Publisher
BMJ Publishing Group
Start Page
1
End Page
10
Journal / Book Title
BMJ Open
Volume
13
Issue
6
Copyright Statement
Copyright information
© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
License URL
Identifier
https://bmjopen.bmj.com/content/13/6/e066022
Publication Status
Published
Date Publish Online
2023-06-14