Engaging patients and clinicians in online reporting of adverse effects during chemotherapy for cancer. The eRAPID system (Electronic patient self-Reporting of Adverse-events: Patient Information and aDvice)

Introduction: During cancer treatment the timely detection and management of adverse events (AE) is essential for patient safety and maintaining quality of life. eRAPID was devised to support oncology practice, by allowing patients to self-report symptoms online at home during and beyond cancer treatment. Fundamentally the eRAPID intervention delivers immediate severity-tailored feedback directly to patients to guide self-management strategies or hospital contact. Patient data are available in electronic health records (EHR) for hospital staff to access and review as part of clinical assessments. Methods for interpreting and addressing PRO scores: The eRAPID intervention has 5 main interconnecting components (clinical integration into standard care pathways, patient symptom reports, self-management advice, information technology and staff/patient training). Following guidance for the development of complex interventions and using a mixed methods approach, eRAPID was created through a number of stages and tested in a series of usability settings before undergoing systematic evaluation in an ongoing randomised controlled trial. These developmental stages are described here with a focus on how decisions were made to enhance patient and professional engagement with symptom reports and encourage interpretation and clinical utilisation of the data. Discussion: Clinically embedded PRO interventions involve a number of elements and stakeholders with different requirements. Following extensive developmental work eRAPID was pragmatically designed to fit into current oncology practices for reviewing and managing chemotherapy-related toxicities

Digital Medicine in Men with Advanced Prostate Cancer – A Feasibility Study of Electronic Patient-reported Outcomes in Patients on Systemic Treatment

AIMS: Electronic patient-reported outcome (ePRO) measures have the potential to improve patient care, both at an individual level by detecting symptoms and at an organisational level to rationalise follow-up. The introduction of ePROs has many challenges, including funding, institutional rigidity and acceptability for both patients and clinicians. There are multiple examples of successful ePRO programmes but no specific feasibility studies in those who are less digitally engaged. Prostate cancer is predominantly a disease of older men and digital exclusion is associated with increased age. We assessed the feasibility of ePRO completion in older men receiving treatment for advanced prostate cancer both within the clinic and from home. MATERIALS AND METHODS: Men receiving palliative systemic treatment were asked to complete ePROs on a tablet computer in the outpatient department at 0 and 3 months. Participants were also offered optional completion from home. Feasibility was assessed via a mixed methods approach. RESULTS: On-site ePRO completion was acceptable to most patients, with 90% finding it easy or straightforward and 80% preferring electronic over paper. Remote completion was more challenging, even for those who accessed e-mail daily and owned a tablet, with only 20% of participants successfully completing ePROs. Barriers to electronic completion can be categorised as technical, attitudinal and medical. Quality of life and symptom ePRO results were comparable with published data. CONCLUSIONS: On-site completion is achievable in this population with limited staff support. However, remote completion requires further work to improve systems and acceptability for patients. Remote completion is critical to add significantly to current clinical care by detecting symptoms or stratifying follow-up

Supporting patient-clinician interaction in chronic HIV care: Design and development of a patient-reported outcomes software application

Background: The consideration of health-related quality of life (HRQL) is a hallmark of best practice in HIV care. Information technology offers an opportunity to more closely engage patients with chronic HIV infection in their long-term management and support a focus on HRQL. However, the implementation of patient-reported outcome (PRO) measures, such as HRQL in routine care, is challenged by the need to synthesize data generated by questionnaires, the complexity of collecting data between patient visits, and the integration of results into clinical decision-making processes. Objective: Our aim is to design and pilot-test a multimedia software platform to overcome these challenges and provide a vehicle to increase focus on HRQL issues in HIV management. Methods: A multidisciplinary team in France and Australia conducted the study with 120 patients and 16 doctors contributing to the design and development of the software. We used agile development principles, user-centered design, and qualitative research methods to develop and pilot the software platform. We developed a prototype application to determine the acceptability of the software and piloted the final version with 41 Australian and 19 French residents using 2 validated electronic questionnaires, the Depression, Anxiety and Stress Scale-21 Items, and the Patient Reported Outcomes Quality of Life-HIV. Results: Testing of the prototype demonstrated that patients wanted an application that was intuitive and without excessive instruction, so it felt effortless to use, as well as secure and discreet. Clinicians wanted the PRO data synthesized, presented clearly and succinctly, and clinically actionable. Safety concerns for patients and clinicians included confidentiality, and the potential for breakdown in communication if insufficient user training was not provided. The final product, piloted with patients from both countries, showed that most respondents found the application easy to use and comprehend. The usability testing survey administered found that older Australians had reduced scores for understanding the visual interface (P=.004) and finding the buttons organized (P=.02). Three-fourths of the respondents were concerned with confidentiality (P=.007), and this result was more prevalent in participants with higher anxiety and stress scores (P=.01), as measured by the Depression, Anxiety and Stress Scale-21 Items. These statistical associations were not observed in 15 French patients who completed the same questionnaire. Conclusions: Digital applications in health care should be safe and fit for purpose. Our software was acceptable to patients and shows potential to overcome some barriers to the implementation of PROs in routine care. The design of the clinicians’ interface presents a solution to the problem of voluminous data, both synthesizing and providing a snapshot of longitudinal data. The next stage is to conduct a randomized controlled trial to determine whether patients experience increased satisfaction with care and whether doctors perceive that they deliver better clinical care without compromising efficiency

An Online Self-Assessment Platform for Community-Dwelling Stroke Survivors: Development and Acceptability

Background: Activity limitation and participation restriction are common in stroke survivors. Digital health technologies are widely utilised to enable self-management. An online platform, specifically developed for stroke survivors can improve the use of electronic Patient-Reported Outcome Measures (ePROM) to enable self-assessment and empower patients to get involved in their care. The overall aim of this PhD was to develop and test the acceptability of an online self-assessment platform, the Stroke Survivors Hub (SSHUB) to support the long-term self-management of stroke survivors. Methods: A systematic review was conducted to explore existing disease-specific PROM to assess daily activity limitations in stroke survivors. This informed the development of the Evaluation of Daily Activity Questionnaire for stroke survivors (EDAQ-SS) with the involvement of 10 stroke survivors and 11 experts. Content validity of the EDAQ-SS was evaluated using the International Classification of Functioning (ICF) Core Set for Stroke. Following this, the EDAQ-SS was digitised as an ePROM and the SSHUB was developed. The SSHUB acceptability was tested with stroke survivors (n=57). Additionally, data collected via the eEDAQ-SS were used to explore patterns of activity limitation and participation restriction in British stroke survivors.Findings: The EDAQ-SS is an appropriate, comprehensive, understandable and relevant PROM to assess the extent of activity limitation and participation restriction in British stroke survivors, and the first stroke specific PROM to differentiate between capacity and performance. The SSHUB is a user-friendly and acceptable online platform to aid self-assessment of stroke survivors’ ability to carry our daily activities and aggregated data provide opportunities to examine the frequency and pattern of these difficulties in community-dwelling stroke-survivors. Conclusion: The EDAQ-SS is an acceptable measure of daily activities for stroke survivors, and freely available on the SSHUB to inform self-management. Future recommendations include the psychometric testing of the EDAQ-SS with a larger sample to establish the measurement validity and reliability, and the strategies to expand the remit of the SSHUB as an online self-management platform