Research Article: Cancer Loyalty Card Study (CLOCS): feasibility outcomes for an observational case–control study focusing on the patient interval in ovarian cancer
Abstract:
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 .
Introduction:
Approximately 7500 new cases of ovarian cancer are diagnosed in the UK each year, and it is estimated that ovarian cancer incidence rates will rise by 15% in the UK between 2014 and 2035. 1 Unfortunately, 23% of patients with ovarian cancer in 2018 were diagnosed at Stage IV 2 when treatment options are less than optimal for survival. Late-stage ovarian cancer diagnosis is often associated with delayed patient presentation and a longer diagnostic interval due to non-specific cancer symptoms (eg, feeling bloated,…
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