TY - JOUR

T1 - Cancer Loyalty Card Study (CLOCS)

T2 - feasibility outcomes for an observational case-control study focusing on the patient interval in ovarian cancer

AU - Brewer, Hannah R

AU - Chadeau-Hyam, Marc

AU - Johnson, Eric

AU - Sundar, Sudha

AU - Flanagan, James

AU - Hirst, Yasemin

N1 - © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.

PY - 2023/6/14

Y1 - 2023/6/14

N2 - OBJECTIVES: Ovarian cancer symptoms are often non-specific and can be normalised before patients seek medical help. The Cancer Loyalty Card Study investigated self-management behaviours of patients with ovarian cancer prior to their diagnosis using loyalty card data collected by two 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 2 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% (n=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 NUMBER: ISRCTN14897082, CPMS 43323, NCT03994653.

AB - OBJECTIVES: Ovarian cancer symptoms are often non-specific and can be normalised before patients seek medical help. The Cancer Loyalty Card Study investigated self-management behaviours of patients with ovarian cancer prior to their diagnosis using loyalty card data collected by two 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 2 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% (n=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 NUMBER: ISRCTN14897082, CPMS 43323, NCT03994653.

KW - Humans

KW - Female

KW - Case-Control Studies

KW - Feasibility Studies

KW - State Medicine

KW - Ovarian Neoplasms/therapy

KW - Publications

U2 - 10.1136/bmjopen-2022-066022

DO - 10.1136/bmjopen-2022-066022

M3 - Journal article

C2 - 37316316

VL - 13

JO - BMJ Open

JF - BMJ Open

SN - 2044-6055

IS - 6

M1 - e066022

ER -