AquaScouts: ePROs Implemented as a Serious Game for Children With Cancer to Support Palliative Care

Abstract

MyPal is a European initiative focusing on the use of the electronic patient reported outcome (ePRO) measures to enhance patient engagement in palliative cancer care via digital self-reporting palliative care for patients with cancer. As a part of its approach, MyPal also focuses on pediatric patients, implementing a specific digital health platform including a serious game to facilitate the reporting of the symptoms and overall status regarding their quality of life (QoL). To this end, the reduction of psychological burden related to frequent reporting, a.k.a. as “reporting fatigue” has been identified as a priority. In this study, we present the MyPal-CHILD platform, emphasizing on the serious game named AquaScouts and its key design decisions, while also emphasizing on the respective challenges. More specifically, we provide insights on the participatory design approach applied during the design of the platform and the high-level goals defined based on end-user input. In addition, the validation process applied before the use of the platform under real-world conditions is also presented. Finally, we discuss a number of challenges and the prospects of deploying eHealth interventions to support palliative care.

Game Changer: Is Palliative Care Ready for Games?

“…7,8 Relevant, existing games include Hello, 9 Go Wish, 10 and the MyPal initiative in Europe. 11 Contrary to many misperceptions, all genders and ages engage with games, especially those available through social media and smartphones. 12-14…”

“…7,8 Relevant, existing games include Hello, 9 Go Wish, 10 and the MyPal initiative in Europe. 11 Contrary to many misperceptions, all genders and ages engage with games, especially those available through social media and smartphones. [12][13][14] Potential Benefits of Serious Games Uniquely, games can present complex concepts using engaging, illustrative representations, especially when compared with paper versions of similar content.…”

Emotion Regulation Flexibility and Electronic Patient-Reported Outcomes: A Framework for Understanding Symptoms and Affect Dynamics in Pediatric Psycho-Oncology

“…One way to collect data in children efficiently is through gamification via mobile apps, in which children can be immersed into a virtual gaming environment and occasionally report back current physical or psychological states [ 52 ]. Our European multicentered and transdisciplinary research project called MyPal has developed such a gamified DHS, a serious game [ 53 ]. In the MyPal4Kids study, we test the AquaScouts app at three pediatric oncology clinical sites in two European countries for usability, acceptability and feasibility of ePRO for palliative care in pediatric oncology patients and their HCPs [ 28 ].…”

“…In the MyPal4Kids study, we test the AquaScouts app at three pediatric oncology clinical sites in two European countries for usability, acceptability and feasibility of ePRO for palliative care in pediatric oncology patients and their HCPs [ 28 ]. Gamified DHS are expedient since they may counter reporting fatigue [ 53 ]. This is particularly relevant in the care and research of children and adolescents.…”

Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach

“…This platform is, after having been validated by end-users, currently in the phase of pilot testing in clinical settings, yielding the first results. The first application designed for child patients comprises a so-called serious game, which combines the motivational character of a non-violent game with the advantages of a modern ePRO-based system (19). The second application implements self and proxy reporting system for parents and health professionals.…”