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

Livrables

Report describing in full detail the defined clinical studies implementation plan.

Report documenting in detail the user requirements of MyPal posing comprehensive requirements to WP3, WP4 and WP5.

MyPal conceptual & reference architecture

D3.1 is the direct outcome of Task 3.1 and will document the innovative, open, reference architecture of the adult’s clinical study.

MyPal ethics

Report establishing the ethical framework of MyPal with potential updates during the course of the project, given the continuous monitoring of ethical issues by T1.1 (live document).

eBook

ebook containing comprehensive clinical guidance on the implementation of PRO systems for adults and children

MyPal palliative care context and user needs

Report defining the context of palliative care for cancer patients as considered in MyPal and the user need with respect to PRO systems.

MyPal-CHILD midterm recruitment report

Mandatory deliverable according to the H2020 rules

Project Website

Report on the project Website, including the internal Website for partner collaboration.

User interaction methods for the adult’s ePRO tool

D3.2 will report on innovative interaction methods for ePROs.

MyPal-CHILD first study subject approvals package

Mandatory deliverable according to the H2020 rules.

MyPal-CHILD report on status of posting results

Mandatory deliverable according to the H2020 rules

MyPal-ADULT midterm recruitment report

Mandatory deliverable according to the H2020 rules

Recommendations and best practices for integrating advanced PRO systems in palliative cancer care

Report consolidating the outcomes of T13 and the outcomes of clinical studies WP6

MyPal impact assessment outcomes

Report on effectiveness and costeffectiveness of the MyPal intervention

MyPal-ADULT first study subject approvals package

Mandatory deliverable according to the H2020 rules.

Quality management plan

Report referring to the plans and the means for quality and risk management assurance.

MyPal ePRO personalisation and user engagement framework

Report presenting the user engagement strategies employed in MyPal and the approach employed for adapting the MyPal tools to the patient needs, in order to ensure high user acceptance and effectiveness of the proposed intervention.

MyPal ePRO tool design

Report describing the architecture and working mechanisms of the ePRO tool for children, including a detailed description of how gamification influences the motivation of the user.

MyPal clinical study protocol definition

Report defining in detail the clinical study protocols for MyPal-ADULT and MyPal-CHILD.

Report on testing and adaptation of the ePRO platform

D3.4 will report on testing and adaptation of the ePRO tool for adults.

State-of-the-art on PRO systems for palliative cancer care

Report setting the scene on the current state-of-the-art of PRO systems for palliative cancer care.

Integration plan for the patient reported outcome tools with the MyPal platform

Report describing the integration plan of the MyPal tools in the overall platform

Evaluation and impact assessment framework

Report describing in full detail the defined impact assessment framework

MyPal-ADULT report on status of posting results

Mandatory deliverable according to the H2020 rules

End of project expert policy and practice Workshop

Report on the outcomes of the Workshop that will be organised in the scope of MyPal in conjunction with a major international Conference eg the annual EAPC Conference

Initial set of tools for intervention design and advanced reporting of outcome

Prototype with the tools that will be employed for the MyPal clinical studies.

Data management plan

Report including the description of the data collected and/or generated in the project, as well as the different processes for ensuring its appropriate management and curation according to international standards.

Publications

Challenges and pitfalls for implementing digital health solutions in clinical feasibility studies in Europe

Auteurs: Meyerheim M, Burns-Gebhart A, Mirzaie K, Garani-Papadatos T, Braun Y, Graf N.
Publié dans: Frontiers in Digital Health, Numéro 2021 Sep 28, 2021, Page(s) 1-5.
Éditeur: Frontiers Media SA
DOI: 10.3389/fdgth.2021.730680

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

Auteurs: Mirzaie K, Burns-Gebhart A, Meyerheim M, Sander A, Graf N.
Publié dans: Cancers, Numéro 2022 Aug 11, 2022, Page(s) 3874, ISSN 2072-6694
Éditeur: Multidisciplinary Digital Publishing Institute (MDPI)
DOI: 10.3390/cancers14163874

MyPal ADULT study protocol: a randomised clinical trial of the MyPal ePRO-based early palliative care system in adult patients with haematological malignancies

Auteurs: Scarfò L, Karamanidou C, Doubek M, Garani-Papadatos T, Didi J, Pontikoglou C, Ling J, Payne C, Papadaki H, Rosenquist R, Stavroyianni N, Payne S, Ghia P, Natsiavas P, Maramis C, Stamatopoulos K.
Publié dans: BMJ Open, Numéro 2021 Nov 2, 2021, Page(s) e050256
Éditeur: BMJ Publishing Group
DOI: 10.1136/bmjopen-2021-050256

MyPal-Child study protocol: an observational prospective clinical feasibility study of the MyPal ePRO-based early palliative care digital system in paediatric oncology patients

Auteurs: 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.
Publié dans: BMJ Open, Numéro 2021 Apr 13, 2021, Page(s) e045226
Éditeur: BMJ Publishing Group
DOI: 10.1136/bmjopen-2020-045226

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

Auteurs: Garani-Papadatos T, Natsiavas P, Meyerheim M, Hoffmann S, Karamanidou C, Payne S.
Publié dans: Frontiers in Digital Health, Numéro 2022 Feb 3 (accepted), 2022, Page(s) not yet assigned
Éditeur: Frontiers Media SA
DOI: 10.3389/fdgth.2022.730430

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

Auteurs: 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.
Publié dans: Frontiers in Digital Health, Numéro 2021 Dec 8, 2021, Page(s) 1-10
Éditeur: Frontiers Media SA
DOI: 10.3389/fdgth.2021.730948

Fostering Palliative Care Through Digital Intervention: A Platform for Adult Patients With Hematologic Malignancies

Auteurs: Koumakis L, Schera F, Parker H, Bonotis P, Chatzimina M, Argyropaidas P, Zacharioudakis G, Schäfer M, Kakalou C, Karamanidou C, Didi J, Kazantzaki E, Scarfo L, Marias K, Natsiavas P.
Publié dans: Frontiers in Digital Health, Numéro 2021 Dec 17, 2021, Page(s) 7-12
Éditeur: Frontiers Media SA
DOI: 10.3389/fdgth.2021.730722

Electronic Patient-Reported Outcome–Based Interventions for Palliative Cancer Care: A Systematic and Mapping Review

Auteurs: Christina Karamanidou, Pantelis Natsiavas, Lefteris Koumakis, Kostas Marias, Fatima Schera, Michael Schäfer, Sheila Payne, Christos Maramis
Publié dans: JCO Clinical Cancer Informatics, Numéro 4, 2020, Page(s) 647-656, ISSN 2473-4276
Éditeur: American Society of Clinical Oncology
DOI: 10.1200/cci.20.00015

"""MyPal: Designing and Evaluating Digital Patient-Reported Outcome Systems for Cancer Palliative Care in Europe"""

Auteurs: Payne S, Collingridge Moore D, Stamatopoulos K.
Publié dans: Journal of Palliative Medicine, Numéro 2021 Jun 4, 2021, Page(s) 962-964
Éditeur: Mary Ann Liebert, Inc., publishers
DOI: 10.1089/jpm.2021.0120

Editorial: Digital Health for Palliative Care

Auteurs: Payne C, Kondylakis H, Koumakis L.
Publié dans: Frontiers in Digital Health, Numéro 2022 Apr 7, 2022, ISSN 2673-253X
Éditeur: Frontiers Media SA
DOI: 10.3389/fdgth.2022.888419

Designing a conversational agent for patients with hematologic malignancies: Usability and Usefulness Study

Auteurs: Chatzimina M, Papadaki H, Pontikoglou C, Koumakis L, Marias K, Tsiknakis M.
Publié dans: 2021 IEEE EMBS International Conference on Biomedical and Health Informatics, Numéro 2021 Aug 10, 2021, Page(s) 1-4
Éditeur: IEEE
DOI: 10.1109/bhi50953.2021.9508587

Development of a ePRO-Based Palliative Care Intervention for Cancer Patients: A Participatory Design Approach.

Auteurs: Karamanidou C, Maramis C, Stamatopoulos K, Koutkias V.
Publié dans: Studies in health technology and informatics, Numéro June 1, 2020, 2020, Page(s) 941-945
Éditeur: IOS Press
DOI: 10.3233/shti200300

Lessons learned from the MyPal Digital Health Intervention: Capitalizing on the Patient Reported Outcomes (PRO) paradigm towards a participatory healthcare for patients with hematological malignancies

Auteurs: Karamanidou C, et al.
Publié dans: HemaSphere, Numéro 2022 Oct 6, 2022
Éditeur: European Hematology Association

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

Auteurs: Christos Maramis, Sheila Payne, Sarka Pospisilova, Richard Rosenquist, Paolo Ghia, Charalampos Pontikoglou, Annette Sander, Michael Doubek, Norbert Graf, Julie Ling, Julia Downing, Christina Karamanidou, Elpida Pavi, Vassilis Koutkias, Fatima Schera, Stephan Kiefer, Lefteris Koumakis, Konstantinos Marias, Stefan Hoffmann, Heather Parker, Jonathan Reston
Publié dans: 2019 IEEE 19th International Conference on Bioinformatics and Bioengineering (BIBE), 2019, Page(s) 405-409, ISBN 978-1-7281-4617-1
Éditeur: IEEE
DOI: 10.1109/bibe.2019.00079

Randomization of Clinical Trial Participants via an Integrated Web Service

Auteurs: Bonotis P, Chytas A, Zacharioudakis G, Karamanidou C, Koumakis L, Stamatopoulos K, Natsiavas P.
Publié dans: Studies in health technology and informatics, Numéro 2021 May 1, 2021, Page(s) 1124-1125
Éditeur: IOS Press
DOI: 10.3233/shti210375

Looking back, looking forward: European Union funded international research projects

Auteurs: Payne S, Harding R.
Publié dans: EAPC blog, Numéro 2022 Apr 4, 2022
Éditeur: EAPC

Pointers to promoting a palliative care project using MyPal as an example

Auteurs: Macdonald G, Downing J.
Publié dans: EAPC blog, Numéro 2021 Jun 16, 2021
Éditeur: EAPC

Game on - using gaming technology to help children with palliative care needs: the MyPal project

Auteurs: Norbert Graf
Publié dans: ehospice, Numéro August 19, 2019, 2019
Éditeur: WHPCA

Digitaler Kumpel: App MyPal unterstützt die Kinderonkologie

Auteurs: Sander, A.
Publié dans: Das Magazin der Medizinischen Hochschule Hannover, Numéro 2021 Sep 22, 2021, Page(s) 13
Éditeur: MHH

Practical ethics in researching technology applications in palliative care: Examples from the MyPal study

Auteurs: Garani-Papadatos T, Payne S, Hughes S.
Publié dans: EAPC blog, Numéro 2021 Jan 11, 2021, Page(s) --
Éditeur: EAPC

The European MyPal study: Developing digital health for adults and children with cancer

Auteurs: Payne S, Salifu Y, Begovic D, Greenwood A. (eds.)
Publié dans: Numéro 2022 Dec 16, 2022
Éditeur: Lancaster University

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