Patient and clinician-reported experiences of using electronic patient reported outcome measures (ePROMs) as part of routine cancer care

Abstract

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-MyHealth ePROMs service. Results 100 patients with lung and head and neck cancers completed a Patient Reported Experience questionnaire. All patients reported that MyChristie-MyHealth was easy to understand and, almost all found it timely to complete and easy to follow. Most patients (82%) reported it improved their communication with their oncology team and helped them to feel more involved with their care (88%). A large proportion of clinicians (8/11) felt ePROMs helped communication with their patients and over half (6/10) felt they led to consultations being more patient focused. Clinicians also felt that the use of ePROMs resulted in patients being more engaged in consultations (7/11) and their cancer care in general (5/11). Five clinicians reported that the use of ePROMs altered their clinical decision making. Conclusions Regular ePROMs collection as part of routine cancer care is acceptable to both patients and clinicians. Both patients and clinicians feel their use improved communication and increased the feeling of patient involvement with their care. Further work is needed to explore the experiences of patients that did not complete the ePROMs as part of the initiative and to continue to optimize the service for both patients and clinicians.

Involving Patients and Clinicians in the Design of Wireframes for Cancer Medicines Electronic Patient Reported Outcome Measures in Clinical Care: Mixed Methods Study

“…Previously, clinicians have reported that they would find an ePROMs solution easy to use and useful [43], as seen in this study. In this study, clinicians expressed worries around additional time, workload, and challenges around data integration with existing IT systems, also seen previously [13,18,43,44]. Perceived benefits highlighted in this study, such as being able to identify specific symptoms, side effects, and supportive care needs of patients, have also been reported elsewhere [43].…”

“…First, clinicians reported that the dashboard would not necessarily improve the effectiveness or productivity of treatment decision-making, nor would it make their job easier, despite saying that the dashboard would help support or facilitate shared decision-making in stage 1. Similarly, in the literature, PROMs are generally seen as useful for clinical decision-making, although they may not always directly impact the decisions made [13,14,47]. Our findings indicate that clinicians may possibly see PROMs as supporting decisions already being made, as opposed to changing the course of decisions entirely.…”

“…The use of patient-reported outcome measures (PROMs) as part of clinical care has been shown to improve QoL and OS [9], support self-management and patient satisfaction with care [10,11], and facilitate communication between patients and clinicians [6,12,13]. PROMs can also assist in identifying patients' supportive care needs and provide an opportunity to address sensitive issues or unexpected concerns [6,11,14,15].…”

A study demonstrating users’ preference for the adapted-REQUITE patient-reported outcome questionnaire over PRO-CTCAE® in patients with lung cancer

“…At the time of writing this paper, it has enrolled over ten thousand patients with more than thirty-five thousand completed electronic questionnaires featuring the direct lay translation of CTCAE. Both patients and clinicians have responded positively to this service due to its benefits in enhancing care ( 39 ).…”