PATIENT VOICES, a project for the integration of the systematic assessment of patient reported outcomes and experiences within a comprehensive cancer center: a protocol for a mixed method feasibility study (original) (raw)
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Journal of Patient-Reported Outcomes
Background Cancer and its treatment can have significant impacts on health status, quality of life and functioning of patients. Direct information from patients regarding these aspects can be collected via electronic platforms in the form of electronic Patient Reported Outcome Measures (ePROMs). Research has shown that the use of ePROMS in cancer care leads to improved communication, better symptom control, prolonged survival and a reduction in hospital admissions and emergency department attendance. Acceptability and feasibility of routine ePROM collection has been reported by both patients and clinicians but to date their use has predominantly been limited to clinical trials. MyChristie-MyHealth is an initiative from a UK comprehensive cancer centre The Christie NHS Foundation Trust which incorporates the regular collection of ePROMs into routine cancer care. This study, carried out as part of a service evaluation, explores patient and clinician experiences of using the MyChristie...
Current Oncology
Electronic patient-reported outcome (ePRO) applications promise great added value for improving symptom management and health-related quality of life. The aim of this narrative review is to describe the collection and use of ePROs for cancer survivorship care, with an emphasis on ePRO-symptom monitoring. It offers many different perspectives from research settings, while current implementation in routine care is ongoing. ePRO collection optimizes survivorship care by providing insight into the patients’ well-being and prioritizing their unmet needs during the whole trajectory from diagnosis to end-of-life. ePRO-symptom monitoring can contribute to timely health risk detection and subsequently allow earlier intervention. Detection is optimized by automatically generated alerts that vary from simple to complex and multilayered. Using ePRO-symptoms during in-hospital consultation enhances the patients’ conversation with the health care provider before making informed decisions about tr...
Clinical Oncology, 2021
Purpose: People living with treatable but not curable cancer often experience a range of symptoms related to their cancer and its treatment. During the COVID-19 pandemic, face-to-face consultations were reduced and so remote monitoring of these needs was necessary. University Hospitals Sussex implemented the routine use of electronic remote patient reported outcome measures (PROMs) in a mixed oncology population, focusing on those with treatable but not curable cancers. Methods: Over a 9-month period, patients were invited to register with My Clinical Outcomes (MCO)-a secure online platform for the collection of electronic PROMs. They were prompted by email to complete assessments (EORTC QLQ-C30, EQ-5D-3L and EQ-5D VAS) routinely every 2 weeks. The team monitored patient scores and changes in these prompted clinical interventions. Results: 324 patients completed at least 1 assessment. The median number of assessments completed by each patient was 8. The most represented tumour groups were secondary breast (28%), prostate (25%) and other (32%). Median scores for the assessments did not deteriorate in a clinically or numerically significant way for patients living with non-curable conditions for the majority of patients monitored. Conclusion: Routine collection of electronic remote PROMS is an effective and useful strategy in providing real time clinical feedback to teams. With integration into existing systems, online platforms (such as MCO) could provide efficient and patient centred information for those providing care for people with cancer.
BMC cancer, 2014
The electronic self report assessment - cancer (ESRA-C), has been shown to reduce symptom distress during cancer therapy The purpose of this analysis was to evaluate aspects of how the ESRA-C intervention may have resulted in lower symptom distress (SD). Patients at two cancer centers were randomized to ESRA-C assessment only (control) or the Web-based ESRA-C intervention delivered to patients' homes or to a tablet in clinic. The intervention allowed patients to self-monitor symptom and quality of life (SxQOL) between visits, receive self-care education and coaching to report SxQOL to clinicians. Summaries of assessments were delivered to clinicians in both groups. Audio-recordings of clinic visits made 6 weeks after treatment initiation were coded for discussions of 26 SxQOL issues, focusing on patients'/caregivers' coached verbal reports of SxQOL severity, pattern, alleviating/aggravating factors and requests for help. Among issues identified as problematic, two measur...
JMIR cancer, 2023
Background: Cancer is a major global health problem. Patient-reported outcome (PRO) systems have been developed to support the treatment of patients with cancer. Although clear evidence of the benefits of the routine use of electronic patient-reported outcomes (ePROs) exists, engaging physicians in using these systems has been challenging. Objective: This study aims to identify and analyze what is currently known about health care professionals' (HCPs) perceived barriers and facilitators that exist and influence the use of ePRO systems for cancer care. Methods: We carried out a systematic mapping study by conducting searches of 3 databases (Association for Computing Machinery, PubMed, and Scopus). Eligible papers were published between 2010 and 2021, and they described HCPs' perspectives on using ePROs. The data on the included papers were extracted, a thematic meta-synthesis was performed, and 7 themes were summarized into 3 categories. Results: A total of 17 papers were included in the study. The HCPs' perceived barriers and facilitators of using ePROs can be summarized into 7 themes: clinical workflow, organization and infrastructure, value to patients, value to HCPs, digital health literacy, usability, and data visualization and perceived features. These themes can be further summarized into 3 categories: work environment, value to users, and suggested features. According to the study, ePROs should be interoperable with hospital electronic health records and adapted to the hospital workflow. HCPs should get appropriate support for their use. Additional features are needed for ePROs, and special attention should be paid to data visualization. Patients should have the option to use web-based ePROs at home and complete it at the time most valuable to the treatment. Patients' ePRO notes need attention during clinical visits, but ePRO use should not limit patient-clinician face-to-face communication. Conclusions: The study revealed that several aspects need improvement in ePROs and their operating environments. By improving these aspects, HCPs' experience with ePROs will enhance, and thus, there will be more facilitating factors for HCPs to use ePROs than those available today. More national and international knowledge about using ePROs is still needed to cover the need for information to develop them and their operating environments to meet the needs of HCPs.
Launching an Electronic Patient-Reported Outcomes Initiative in Real-Time Clinical Practice
JNCI Monographs, 2021
Patient-reported outcomes play an essential role in improving care across the cancer continuum. This paper reports on the experience of a tertiary care center to standardize the use, collection, and reporting of patient-reported outcomes (PROs) in 10 disease-specific survivorship clinics. To minimize the burden of patients to complete surveys, an institutional committee with oversight on all patient surveys required an application be reviewed and approved before their distribution in a clinic. To begin collecting PROs, each clinic submitted an application tailored to its clinical operations, staffing, and scheduling characteristics. The dates for the submission of each application were staggered over a 2-year period, which contributed to a lack of uniformity in the project (ie, approval dates, start dates, collection and reporting of results). The delays were primarily due to the time and resources required to build the electronic version of the PRO survey into the institutional ele...
BMC Medical Informatics and Decision Making, 2015
Background: Patient-reported outcomes (PRO) provide a more comprehensive picture of patients' quality of life than do mere physicians' ratings. Electronic data collection of PRO offers several advantages and allows assessments at patients' homes as well. This study reports on patients' personal internet use, their attitudes towards electronic and web-based PRO assessment (clinic-ePRO and home-ePRO) and the feasibility of these two assessment modes.