Using Electronic Patient Reported Outcomes to Foster Palliative Cancer Care: The MyPal Approach

Abstract

Palliative care is offered along with primary treatment to improve the quality of life of the patient by relieving the symptoms and stress of a serious illness such as cancer. As per modern definitions, palliative care is appropriate at any age and at any stage of the illness, regardless of the eventual outcome. Patient-reported outcomes (PRO), i.e., health status measurements reported directly by the patients or their proxies, and especially their availability in electronic form (ePROs), are gradually gaining popularity as building blocks of innovative palliative care interventions. This paper presents MyPal, an EC-funded collaborative research project that aims to exploit advanced eHealth technologies to develop and evaluate two novel ePRO-based general palliative care interventions for cancer patients. In particular, the paper presents: (1) a short overview of MyPal; (2) the target populations, i.e., adults suffering from chronic lymphocytic leukemia (CLL) or myelodysplastic syndromes (MDS), and children with solid or hematologic malignancies; (3) the ePRO-based interventions being designed for the target populations, (4) the eHealth platform for delivering the interventions under development, and (5) the international, multi-center clinical studies to be conducted for assessing these interventions, i.e., a randomized controlled trial (RCT) and an observational study for adults and children, respectively.