Abstract
People with blood cancers face an uncertain future. Although some have a good prognosis, others can have profound physical and psychological symptoms, adversely impacting their quality of life. This has been compounded by the social isolation and disruption to normal cancer services caused by the Covid-19 pandemic. Using digital technologies to collect electronic patient-reported outcomes (ePROs) can improve communication between patients, family caregivers, and health care providers, and better inform clinical decision making.1,2 ePROs can allow the identification of unmet needs or symptoms that may otherwise be under-reported, allowing health care professionals to provide timely and accurate interventions, removing or supplementing the need for face-to-face assessments. The use of ePROs encourages the active participation of patients and their caregivers in identifying and communicating their condition, and their care needs, improving both their own and their health care provider's knowledge of the patient's experience of cancer over the course of the disease trajectory.
As the potential of using digital platforms to improve palliative care continues to grow, it remains unclear whether ePROs are able to replicate the richness of information achieved through face-to-face discussion with health care professionals are acceptable to patients, and the implications for the patient–professional relationship. There is a risk that the need for accurate patient reporting will lead to ePROs being developed and implemented in palliative care without an understanding of the implications for such technology on patient care, or appropriate evaluation of their impact on patient outcomes.
A potential drawback of ePROs is the reliance on standardized validated questionnaires, which may limit the nature of the data reported to a closed set of predefined answers. In responding to predefined questions on a digital platform, the wider experiences of the patient and their needs may remain under-reported, which may not be the case through face-to-face contact in which a more in-depth and nuanced conversation is possible. 3 It is unknown whether some PROs are more suited to electronic reporting than others, in either their accurate measurement of the symptom of interest or their acceptability to the patient.
The implications of ePROs for the patient, caregiver, and health care professionals' relationship are also unclear. The establishment, development, and ongoing maintenance of a patient–professional relationship is highlighted as a core constituent of palliative care by the European Association for Palliative Care (EAPC). 4 The importance of providing patient-centered care, respecting patient values and goals, and adopting empathetic listening skills are key abilities required by health care professionals. The extent to which ePROs can replicate or improve the patient–professional relationship, or whether they should be regarded as a supplement to standard care, is unknown.
The acceptability of ePROs to patients, family caregivers, and health care professionals, or how effective ePROs are in real-world clinical settings, is also unclear. The use of ePROs requires patients and family caregivers to engage with an Internet-connected device, such as a smartphone, tablet, or computer. The extent to which patients have access to the Internet obviously varies, depending on the particular setting, hence raising a potential concern of exclusion and/or bias that could confound the interpretation of the findings. Moreover, it is currently yet to be determined whether patients feel comfortable using such technology to input personal data on their condition, or how these barriers can be addressed. Further research on how ePROs can be implemented or evaluated in clinical practice, and the potential limitations and disadvantages of such as an approach, provided the rationale for the MyPal research project.
What Is the MyPal Project About?
Our project, called MyPal, is funded by the Horizon 2020 Research & Innovation Action program by the European Union, for 42 months from January 2019. The “MyPal” project involves seven European countries (Belgium, Czech Republic, Greece, Germany, Italy, Sweden, and United Kingdom) drawing together commercial technology companies, clinical research centers, and leading universities. It aims to facilitate palliative care for children and adults with blood cancer and their family caregivers by developing and testing ePRO systems. The project focuses on two different patient groups (MyPal Adults study): adults with hematological malignancies, and (MyPal4Kids study): children with blood cancers or solid tumors. In both studies, the MyPal digital health platform will be used to record self-reported PROs from patients, family caregivers, and health care professionals.
The project is supported by the EAPC and ICPCN (International Children's Palliative Care Network) to ensure that patient and professional perspectives are addressed at all stages of the project. The International Observatory on End of Life Care at Lancaster University, United Kingdom, will prepare a freely available ebook that will ensure that clinicians, patients, and their caregivers benefit from improvements arising from the project. For more information about the project see our website https://mypal-project.eu/or follow the project on Twitter @H2020MyPal
How Will the MyPal Project Investigate Patient-Reported Outcomes?
The MyPal Adults study is a multicenter randomized clinical trial of patients with chronic lymphocytic leukemia or myelodysplastic syndromes, two of the most common hematological malignancies. The trial aims to evaluate any improvement in quality of life scores and symptom management in those with access to the MyPal systems compared with standard care. The study will recruit 300 patients in hospitals in Czech Republic, Greece, Italy, and Sweden. Those in the intervention arm will be invited to self-report data on their symptoms for six months through the MyPal cellphone application, and by using a wearable device (Fitbitvia) to collect data on physical activity and sleep patterns. Patients will complete ePROs, including the Integrated Palliative Care Outcome Scale, the Edmonton Symptom Assessment System, the Brief Pain Inventory, and the Emotion Thermometers to measure emotional distress.5–8 In addition, data on satisfaction with care will be collected using the European Organisation for Research and Treatment of Cancer (EORTC) Patient Satisfaction with Cancer Care questionnaire. 9 Patients will have access to personalized motivational messages and information.
The MyPal4Kids nonexperimental observational study aims to evaluate the feasibility of integrating an ePRO-based system for palliative care in children with cancer into pediatric oncology care and assessing its benefit and support for the child and their parents. It will explore the appropriateness and acceptability of ePROs in 100 children and their parents, using the Mini-SSPedi and SSPedi questionnaires, PedsQLTM Cancer Module, the Impact on Family Scale, EQ-5D-3L, and EORTC PATSAT C33.10–16 Data for this study will be collected using a bespoke gamification app, suitable to three age cohorts, in three hospitals in the Czech Republic and Germany over six months.
In both studies, ePROs will be provided through the MyPal digital health platform and barriers, facilitators and preferences in using the platform will be investigated. The feasibility of integrating comprehensive patient-centered ePROs for palliative care into wider care will be explored and the benefits for patients and their families assessed. The impact on health care professionals will also be measured using a specifically developed web-based online questionnaire evaluating additional time spent on care, usability and user experience.
What Are the Likely Benefits of This Research?
This project is likely to provide important new evidence about how digital health systems can be used to improve quality of life and facilitate better communication between patients and health professionals. The feasibility and acceptability of using a serious game app for children will be evaluated. The project outputs will include a range of digital tools such as the following:
MyPal app for adults with cancer MyPal game app for children with cancer MyPal digital health systems Ebook describing the study outcomes for clinicians.
Footnotes
Funding Information
This project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No. 825872.