Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: The electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system

Abstract

BackgroundCancer survivors can face significant physical and psychosocial challenges; there is a need to identify and predict which survivors experience what sorts of difficulties. As highlighted in the UK National Cancer Survivorship Initiative, routine post-diagnostic collection of patient reported outcome measures (PROMs) is required; to be most informative, PROMs must be linked and analysed with patients' diagnostic and treatment information. We have designed and built a potentially cost-efficient UK-scalable electronic system for collecting PROMs via the internet, at regular post-diagnostic time-points, for linking these data with patients' clinical data in cancer registries, and for electronically managing the associated patient monitoring and communications; the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. This study aims to test the feasibility of the ePOCS system, by running it for 2 years in two Yorkshire NHS Trusts, and using the Northern and Yorkshire Cancer Registry and Information Service.Methods/DesignNon-metastatic breast, colorectal and prostate cancer patients (largest survivor groups), within 6 months post-diagnosis, will be recruited from hospitals in the Yorkshire Cancer Network. Participants will be asked to complete PROMS, assessing a range of health-related quality-of-life outcomes, at three time-points up to 15 months post-diagnosis, and subsequently to provide opinion on the ePOCS system via a feedback questionnaire. Feasibility will be examined primarily in terms of patient recruitment and retention rates, the representativeness of participating patients, the quantity and quality of collected PROMs data, patients' feedback, the success and reliability of the underpinning informatics, and the system running costs. If sufficient data are generated during system testing, these will be analysed to assess the health-related quality-of-life outcomes reported by patients, and to explore if and how they relate to disease, treatment and/or individual differences characteristics.DiscussionThere is currently no system in the UK for collecting PROMs online and linking these with patients' clinical data in cancer registries. If feasible, ePOCS has potential to provide an affordable UK-scalable technical platform to facilitate and support longitudinal cohort research, and improve understanding of cancer survivors' experiences. Comprehensive understanding of survivorship difficulties is vital to inform the development and provision of supportive services and interventions.

Psychometric evaluation of the Revised Illness Perception Questionnaire (IPQ-R) in cancer patients: Confirmatory factor analysis and Rasch analysis

“…The principal limitation of this study is that the sample, although large, comprises just 46.1% of the patients invited to join the wider ePOCS feasibility study [33]. Patients who declined to join the ePOCS study were older and living in less affluent areas.…”

“…The design of the ePOCS system is described elsewhere [32], and the feasibility study protocol has been published open-access [33]. In the feasibility study, which received NHS ethical approval, patients completed questionnaires using the ePOCS system at three time-points; the IPQ-R was completed at the first time-point, within 6 months post-diagnosis.…”

“…Participants were not permitted to skip questions, but had the option to indicate they 'prefer not to answer'. Comprehensive procedural information is available in the ePOCS feasibility study protocol [33].…”

“…Also, where items refer to 'symptoms' we used 'symptoms/ side effects', as for cancer patients the two are commonly indistinguishable; this is consistent with use of the IPQ-R in a recent large-scale prospective survey of colorectal cancer patients [34], with which we wished to facilitate comparison of our findings. The causes dimension was omitted from the ePOCS study [33], and the identity dimension is not included in the current analyses; as described earlier, these two factors differ from the other seven, and have previously been excluded from CFA [20,25].…”

Traditional and Rasch psychometric analyses of the Quality of Life in Adult Cancer Survivors (QLACS) questionnaire in shorter-term cancer survivors 15months post-diagnosis

“…Comprehensive accounts of the design and development of the ePOCS system [35], and the protocol [36] and results [37] …”