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MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems

Periodic Reporting for period 1 - MyPal (MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems)

Reporting period: 2019-01-01 to 2020-06-30

Following a cancer diagnosis, patients face a series of challenges. They have to make difficult decisions about treatments, deal with an additional daily burden and cope with fear and anxiety associated with a life-threatening disease. Cancer is a challenging experience for both adults and children, as well as their families, caregivers and friends. In the course of cancer, patients will experience a variety of physical and psycho-emotional symptoms.
Healthcare providers also encounter many challenges while caring for patients with cancer. Communication with patients is quite challenging and it often requires a sensitive approach, starting with the announcement of the cancer diagnosis and all the way through to treatment courses and possible relapses.
During the course of cancer the patients will experience a variety of physical and psycho-emotional symptoms; these will have to be addressed by a team of healthcare professionals specially trained in palliative care. The ultimate goal of palliative care is to improve the quality of life of patients that go through life-threatening diseases like cancer. For palliative care to be most effective, patients need to participate actively and communicate their personal needs as they arise.
In recent years, digital health technologies have provided significant aid in various aspect of healthcare, including palliative care. These technologies are often used to build modern and powerful digital health platforms addressed to patients, their carers and healthcare professionals, connecting them virtually.
This is where MyPal comes into play. MyPal is an ongoing initiative, aiming to develop and test digital health solutions for palliative care in cancer patients.
In a nutshell, MyPal is a digital health platform that makes uses of modern digital technologies and methods to support cancer patients, their carers and physicians in various ways. MyPal aims to facilitate patients to record and communicate their symptoms but also to improve their knowledge about their disease. Moreover, the MyPal platform promotes the active participation of patients in the management of their disease, including care decisions, and motivates patients to adhere to treatment via personalized messages.
With MyPal, adult patients can report their physical and emotional symptoms on their mobile using the MyPal-ADULT app; children with cancer do so while playing the MyPal-CHILD game on the family’s tablet. There is also a smartphone application for the carers of the children, while the treating physicians will be able to monitor patients via the MyPal web portal.
The MyPal solution will be tested by cancer patients, their carers and their physicians in 7 clinics in 5 European countries. If the test is successful, the MyPal solution will be promoted as part of routine palliative care of cancer patients throughout Europe with the ambition to improve their quality of life and outcome.
MyPal aims to foster palliative care for cancer patients by leveraging patient reported outcome (PRO) systems through their adaptation to the personal needs of the cancer patient and his/her caregiver(s). MyPal will demonstrate and validate the proposed MyPal intervention in two different patient groups through carefully designed clinical studies that will be conducted in diverse healthcare settings across Europe. During the first months of MyPal, the MyPal consortium developed the research protocols of the two clinical studies and submitted them to the clinical centers’ ethical committees. The MyPal platform including the ePRO tools used for the interaction of patients participating in the MyPal-ADULT study with a smartphone as well as the healthcare professionals (HCP) web-application have been designed. Apart from having the opportunity to answer ePROs, patients will be using a drug management tool and receiving motivational messages while HCPs can use a HCP-patient communication tool and an Intelligent ePRO analytics toolkit. The interaction of patients participating in the MyPal-CHILD study with healthcare professionals has also been designed. Children will report their symptoms via ePROs in a gamified app and carers will also have an ePRO application to report children’s symptoms, as well as their own Quality of Life. Both apps have been developed and users are critically evaluating them in terms of functionality and usability. The MyPal Project Website is online and will be enriched throughout the lifetime of MyPal with news and activities. MyPal is present in social media but also through traditional academic channels such as publications and conference presentations.
One of the main goals of MyPal is to design, implement and evaluate two ePRO-based palliative care (PC) interventions, one for adult cancer patients and one for children with cancer and their parents. These ePRO-based interventions are novel approaches are going to be implemented firstly in 7 participating clinical sites in 5 European countries, and if proven effective, integrated in palliative care regimes and healthcare systems across Europe. MyPal intends to transform the current palliative care context by offering a comprehensive patient centred intervention to patients in need of supportive care throughout the course of their disease. Through the digitization of patient reported outcomes, MyPal enables patients to effectively report symptoms and healthcare providers to monitor and address issues important for the patient in a timely fashion. As such, the MyPal intervention reflects a paradigm shift in the delivery of palliative care for cancer patients. It is based on reinforcing the value of active patient reporting through novel tools and exploiting the reported data for: (a) early detection of deviations in the patient’s state, (b) better communication between patient and healthcare providers, (c) facilitating integrated palliative care, and (d) shared decision making.

During the development of the MyPal system a fundamentally user-centered approach has been adopted in order to address some of the most important aspects for users; namely personalization, user engagement and user experience. In order to effectively elucidate the user requirements for the development of eHealth interventions for the palliation of cancer patients, the MyPal research team relied on a modern and multi-modal methodology. Specifically, the scientific literature on unmet palliative care needs was reviewed, the palliative care expertise within the consortium was exploited and a participatory design paradigm was adopted. Within this context, a series of focus group discussions were conducted with adult cancer patients and children with cancer and their parents in all participating clinical sites for the purposes of User Experience Research and Validation Procedures.
The proposed methodology surpasses the already established state-of-the-art services; it would be useful and can easily be transferred, as-is or with variations, to other research efforts that attempt to develop eHealth systems for palliative care or other healthcare areas.