Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

Abstract

BackgroundRoutine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries.ObjectiveThis study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis.MethodsPatients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system.ResultsePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback was encouraging and positive, with most patients reporting that they found ePOCS easy to use and that, if asked, they would continue using the system long-term (86.2%, 361/419). ePOCS was not administratively burdensome to run day-to-day, and patient-initiated inquiries averaged just 11 inquiries per month.ConclusionsThe informatics underlying the ePOCS system demonstrated successful proof-of-concept – the system successfully linked PROs with registry data for 100% of the patients. The majority of patients were keen to engage. Participation rates are likely to improve as the Internet becomes more universally adopted. ePOCS can help overcome the challenges of routinely collecting PROs and linking with clinical data, which is integral for treatment and supportive care planning and for targeting service provision.

Implementation of Patient-Reported Outcome Measures in U.S. Total Joint Replacement Registries: Rationale, Status, and Plans

“…The Swedish hip registry uses the brief EQ-5D and reported completion by more than 90% of patients 24 , while the United Kingdom uses the twelve-item Oxford assessment and reported completion by 79% to 85% for various postoperative intervals and patient subgroups [25][26][27][28][29][30][31] . Beyond for total joint replacement, similar PRO completion rates have been reported for a cancer-survivor registry: 85% at six months and 66% at fifteen months postoperatively 32 .…”

Integrated care pathways for cancer survivors – a role for patient-reported outcome measures and health informatics

“…Patients favoured having a reminder system using automated e-mails or text messages. In the ePOCS study [12], this method of reminders proved effective and acceptable to survivors on follow-up.…”

“…Large-scale collection of PROMs data in routine practice or epidemiological studies can identify issues which are important to different groups of cancer survivors [12,13], particularly when comparison data is available for matched non-cancer samples [14]. In 2014 Macmillan published the findings of an analysis of linked cancer registry and inpatient Hospital Episode Statistics, from a programme called "Routes to diagnosis" aiming to improve outcomes for cancer survivors by assessing big data to understand variations in survival outcomes, morbidity and cost between patient groups [27].…”

“…There are plans to expand on this analysis by including data from other sources and potentially, PROMs could be used to add valuable insight from the patient perspective. The feasibility of this approach has already been proven in the UK and the Netherlands, with studies collecting routine PROMs via the web from cancer survivors and integrating data into national cancer registries [12,15]. …”

Patient-reported outcomes in cancer survivorship

“…The next step needed is to integrate PROs into routine clinical care, so that timely and accurate assessments can translate into better management of issues -ultimately improving the lives of cancer survivors. A large effort in the UK called the Electronic Patient-Reported Outcome from Cancer Survivors (ePOCS) is investigating the feasibility of collecting routine PRO data in cancer survivors on a national level, and linking these data into the cancer registries [42].…”