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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2021 Special Edition 2 - Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1136/bmjopen-2020-045226" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2020-045226</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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MyPal-Child Study Protocol: An Observational Prospective Clinical Feasibility Study of the MyPal ePRO-Based Early Palliative Care Digital System in Paediatric Oncology Patients
Publisher
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BMJ Open
Date
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2021
Subject
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paediatric oncology; paediatric palliative care; health informatics
Creator
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Meyerheim M; Karamanidou C; Payne S; Garani-Papadatos T; Sander A; Downing J; Stamatopoulos K; Ling J; Payne C; Scarfò L; Lokaj P; Maramis C; Graf N
Description
An account of the resource
INTRODUCTION: Electronic patient-reported outcomes (ePROs) have tremendous potential to optimise palliative and supportive care for children with cancer, their families and healthcare providers. Particularly, these children and their families are subjected to multiple strains caused by the disease and its treatment. The MyPal digital health platform is designed to address these complex demands by offering pursuant ePRO-based functionalities via two mobile applications, one developed for children and the other for their parents. METHODS AND ANALYSIS: In this observational prospective feasibility study, 100 paediatric oncology patients aged between 6 and 17 years and at least one of their parents/legal guardians will be recruited at three clinical sites in two European countries (Germany and Czech Republic). They will use the mobile applications which are part of the novel digital health platform. During a 6-month study period, participants will complete various ePROs via the applications addressing quality of life, satisfaction with care and impact of the disease on the family at monthly intervals. Additionally, priority-based symptom reporting is integrated into a serious game for children. Outcomes that will be assessed concern the feasibility and the evaluation of the newly designed digital health platform to contribute to the evidence base of clinical ePRO use in paediatric oncology and palliative care process. ETHICS AND DISSEMINATION: The MyPal-Child study obtained ethical approval from the Ethics Committee responsible for the University of Saarland, that is, the Ärztekammer des Saarlandes, the Ethics Committee of the Medical School Hannover and the Ethics Committee of the University of Brno. Study results will be disseminated through scientific publications, presentations at international conferences, congresses and a final report to the European Commission. General publicly accessible information can be found on the project website (www.mypal-project.eu) and social media. TRIAL REGISTRATION NUMBERS: U1111-1251-0043, DRKS00021458, NCT04381221.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2020-045226" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-045226</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2021 Special Edition - Oncology
Bmj Open
Downing J
Garani-Papadatos T
Graf N
health informatics
Karamanidou C
Ling J
Lokaj P
Maramis C
Meyerheim M
Paediatric oncology
paediatric palliative care
Payne C
Payne S
Sander A
Scarfò L
Stamatopoulos K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2022 Special Edition 3 - Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.3389/fdgth.2021.730948" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fdgth.2021.730948</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
AquaScouts: ePROs Implemented as a Serious Game for Children With Cancer to Support Palliative Care
Publisher
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Frontiers in Digital Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Creator
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Hoffmann S; Schraut R; Kröll T; Scholz W; Belova T; Erhardt J; Gollmer D; Mauck C; Zacharioudakis G; Meyerheim M; Bonotis P; Kakalou C; Chatzimina M; Karamanidou C; Sander A; Didi J; Graf N; Natsiavas P
Description
An account of the resource
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.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fdgth.2021.730948" target="_blank" rel="noreferrer noopener">10.3389/fdgth.2021.730948</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2022 Special Edition 3 - Oncology List
Belova T
Bonotis P
Chatzimina M
Childhood Cancer
Didi J
eHealth
Erhardt J
Frontiers in Digital Health
Gollmer D
Graf N
Hoffmann S
Kakalou C
Karamanidou C
Kröll T
Mauck C
Meyerheim M
mHealth
Natsiavas P
Palliative Care
Patient Reported Outcomes
Sander A
Scholz W
Schraut R
serious games
Zacharioudakis G