Abstract
Patient-reported outcomes (PROs) are an emerging paradigm in clinical research and healthcare, aiming to capture the patient's self-assessed health status in order to gauge efficacy of treatment from their perspective. As these patient-generated health data provide insights into the effects of healthcare processes in real-life settings beyond the clinical setting, they can also be viewed as a resolution beyond what can be gleaned directly by the clinician. To this end, patients are identified as a key stakeholder of the healthcare decision making process, instead of passively following their doctor's guidance. As this joint decision-making process requires constant and high-quality communication between the patient and his/her healthcare providers, novel methodologies and tools have been proposed to promote richer and preemptive communication to facilitate earlier recognition of potential complications. To this end, as PROs can be used to quantify the patient impact (especially important for chronic conditions such as cancer), they can play a prominent role in providing patient-centric care. In this paper, we introduce the MyPal platform that aims to support adults suffering from hematologic malignancies, focusing on the technical design and highlighting the respective challenges. MyPal is a Horizon 2020 European project aiming to support palliative care for cancer patients via the electronic PROs (ePROs) paradigm, building upon modern eHealth technologies. To this end, MyPal project evaluate the proposed eHealth intervention via clinical studies and assess its potential impact on the provided palliative care. More specifically, MyPal platform provides specialized applications supporting the regular answering of well-defined and standardized questionnaires, spontaneous symptoms reporting, educational material provision, notifications etc. The presented platform has been validated by end-users and is currently in the phase of pilot testing in a clinical study to evaluate its feasibility and its potential impact on the quality of life of palliative care patients with hematologic malignancies.
Highlights
Definition of palliative care has radically changed in the last years from a focus on end-stage cancer to include the trajectory of all life-limiting conditions
In order to evaluate the potential impact on both emotional and physical symptoms of the proposed platform on adult patients with hematological malignancies, a specialized clinical study has been designed aiming to investigate if it can lead to improved quality of life via a two-arms randomized control trial (RCT)
A number of widely accepted measurement scales and standardized questionnaires are included, i.e., the EORTC QLQ-C30 General Questionnaire [11], the Euroqol EQ5D [12], Integrated Palliative Care Outcome Scale –(IPOS) [13], Edmonton Symptom Assessment System (ESAS) [14], Brief Pain Inventory (BPI) [15] and Emotion Thermometer (ET) [16], as well the overall patient satisfaction with treatment is depicted via the European Organization for Research and Treatment of Cancer satisfaction with cancer care core questionnaire (EORTC PATSAT C33) [17]
Summary
Definition of palliative care has radically changed in the last years from a focus on end-stage cancer to include the trajectory of all life-limiting conditions. World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual”(1). Its main goal is to preserve the best possible quality of life until death by supporting the patient through physical problems but other additional problems of a social, psychological, and spiritual nature To this aim, palliative care is focusing on the patients themselves and on their families. Though these results were not replicated in European studies, they deserve further investigation considering their potential relevance for the management of the patients with chronic conditions and in particular those diagnosed with solid tumors or hematological malignancies
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