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

Christina Karamanidou, Christos Maramis, Kostas Stamatopoulos, Vassilis Koutkias
2020 Studies in Health Technology and Informatics  
This paper describes a qualitative study conducted in the context of developing a novel ePRO (electronic Patient Reported Outcome) based palliative care intervention for cancer patients.  ...  A participatory design was chosen as the value of this approach has been well established in eHealth systems' design as well as the development of novel healthcare services.  ...  Sample screenshot from the patient vignette. C. Karamanidou et al. / Development of a ePRO-Based Palliative Care Intervention  ... 
doi:10.3233/shti200300 pmid:32570520 fatcat:fzbswulkjffuhbjc4pigdqop6y

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

Lefteris Koumakis, Fatima Schera, Heather Parker, Panos Bonotis, Maria Chatzimina, Panagiotis Argyropaidas, Giorgos Zacharioudakis, Michael Schäfer, Christine Kakalou, Christina Karamanidou, Jana Didi, Eleni Kazantzaki (+3 others)
2021 Frontiers in Digital Health  
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, 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 the last 10 years, a number of digital interventions aiming to support palliative cancer care based on the electronic PRO (ePRO) systems have been evaluated.  ... 
doi:10.3389/fdgth.2021.730722 pmid:34977857 pmcid:PMC8718505 fatcat:fvmxcissszaqnjs2iltyvxh2gq

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

Lydia Scarfò, Christina Karamanidou, Michael Doubek, Tina Garani-Papadatos, Jana Didi, Charalampos Pontikoglou, Julie Ling, Cathy Payne, Helen Α Papadaki, Richard Rosenquist, Niki Stavroyianni, Sheila Payne (+4 others)
2021 BMJ Open  
A participatory design was adopted in the development of the digital platform involving focus groups and discussions with patients to identify needs and preferences.  ...  MyPal is a Horizon 2020 Research & Innovation Action aiming to meet this challenge and foster palliative care for patients with CLL or MDS by leveraging ePRO systems to adapt to the personal needs of patients  ...  study in palliative care using an innovative approach based on electronic patient-reported outcome-based systems to improve the quality of life of patients with chronic lymphocytic leukaemia (CLL) or  ... 
doi:10.1136/bmjopen-2021-050256 pmid:34728446 pmcid:PMC8565565 fatcat:lzgkvq5hojc6jj4m5pnongqkjy

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

Stefan Hoffmann, Robert Schraut, Thomas Kröll, Wiebke Scholz, Tatiana Belova, Johann Erhardt, Daniel Gollmer, Christian Mauck, Giorgos Zacharioudakis, Marcel Meyerheim, Panos Bonotis, Christine Kakalou (+6 others)
2021 Frontiers in Digital Health  
care for patients with cancer.  ...  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  ...  The Commission is not responsible for any use that may be made of the information it contains.  ... 
doi:10.3389/fdgth.2021.730948 pmid:34957461 pmcid:PMC8692290 fatcat:66dilqxjpjcbnkkgikct2urtbu

Striving to Fill in Gaps between Clinical Practice and Standards: The Evolution of a Pan-Canadian Approach to Patient-Reported Outcomes Use

Amanda Caissie, Robert Olson, Lisa Barbera, Jennifer O'Donnell, Carol-Anne Davis, Jennifer Croke, Louise Bird, John Kildea, Erika Brown, Michael Brundage, Michael Milosevic
2022 Current Oncology  
Facilitated through a quality improvement initiative spearheaded by the Canadian Partnership for Quality Radiotherapy (CPQR), and now guided by the Canadian Association of Radiation Oncology (CARO)'s Quality  ...  The current review discusses the evolution of a pan-Canadian approach to PROs use, striving to fill in gaps between clinical practice and guideline recommendations through multi-centre and multidisciplinary  ...  No funders had a role in the writing of this review manuscript.  ... 
doi:10.3390/curroncol29050296 pmid:35621686 pmcid:PMC9140091 fatcat:o7jokxhi6naytldyerd5qtsh3e

Oral Abstracts

2021 Asia-Pacific Journal of Clinical Oncology  
To fill a critical gap in understanding about the safety and efficacy of the COVID-19 vaccines for cancer patients, Cancer Australia expedited the rapid establishment of a clinical study for the COVID-  ...  Cancer Australia has leveraged the opportunity to undertake a range of evidence-based and data-informed initiatives to understand the potential impacts of the pandemic on cancer investigations and treatment  ...  Since 2011, our team has developed an ePRO system. PROMPT-Care, and demonstrated its acceptability, feasibility and efficacy in a broad population of cancer patients in NSW.  ... 
doi:10.1111/ajco.13715 fatcat:dmepliro6jcwzg7ihbslf4px6e

Abstracts for MASCC/ISOO Annual Meeting 2019

2019 Supportive Care in Cancer  
Methods The melanoma module was developed according to a participatory design approach: patients, health care professionals and researchers worked closely together in the developmental process.  ...  phone based supportive care interventions for people affected by cancer.  ...  care nurses can be trained to effectively deliver a group CBT intervention for the alleviation of hot flushes in women who have had breast cancer.  ... 
doi:10.1007/s00520-019-04813-1 pmid:31102057 fatcat:ifyweeqs7ndvphxh6j4tqya4u4

28th Annual Conference of the International Society for Quality of Life Research

Marina Shawd
2021 Quality of Life Research  
(mPROMIS-UE) for a mixed literacy hand surgery patient population in Baltimore, Maryland (USA).  ...  We developed the Multimedia Adaptation Protocol (MAP) for adapting validated, text-based PROMs to multimedia versions that can be self-administered in mixed literacy populations.  ...  lung cancer surgery at the time of discharge, and to provide a reference for the development and implementation of future ePRO precision intervention programs.  ... 
doi:10.1007/s11136-021-02976-1 pmid:34642903 pmcid:PMC8508470 fatcat:gtwwkt2ufngcfpmuqtzmutnyfa

Proceedings from the 10th Annual Conference on the Science of Dissemination and Implementation

2018 Implementation Science  
for translating research evidence and transporting evidence-based health interventions into clinical and community practice settings.  ...  into two tracks: Patient-level interventions and System-level interventions due to the growth of content in this area), Global Dissemination and Implementation, Promoting Health Equity and Eliminating  ...  A promising approach to improve integration is a triggered palliative care consultation (TPCC).  ... 
doi:10.1186/s13012-018-0728-7 fatcat:grkd373r2fddbl4n4vm3cffur4

Meeting abstracts from the 5th International Clinical Trials Methodology Conference (ICTMC 2019)

2019 Trials  
Based on detailed microcosting of 'representative' interventions for combinations of intervention components, we are developing a novel method for assigning costs to the individual components.  ...  that trialists should "develop a systematic, prioritised, risk-based approach to monitoring clinical trials".  ...  We combined pre-trial and 'real-time' (QRI) investigation of recruitment issues in the Prepare for Kidney Care RCT: a challenging trial comparing the (cost)-effectiveness of 'preparing for dialysis' or  ... 
doi:10.1186/s13063-019-3688-6 pmid:31639031 pmcid:PMC6805286 fatcat:arl4zrirdnho3bwxzg3a66hd24

Oral Abstracts

2019 Asia-Pacific Journal of Clinical Oncology  
in cancer care, there is a need for a systematic approach to development and Background: Information available for patient use is complex, peppered with medical jargon and requires a high reading ability  ...  Methods: The following stepped approach was taken in developing a comprehensive information site for head and neck cancer (HNC) patients: BRAF V600E mutations are identified in ≤15% of metastatic colorectal  ...  and participatory design.  ... 
doi:10.1111/ajco.13262 pmid:31674106 fatcat:ubzvwtd6fvbevk7mfdjtoe76h4

Meeting abstracts from the 4th International Clinical Trials Methodology Conference (ICTMC) and the 38th Annual Meeting of the Society for Clinical Trials

2017 Trials  
We identified 7 approaches to intervention development ('type' in the typology) including theory-based, participatory, person-based and pragmatic. Each type included sub-types of approaches.  ...  As a case example, the evidence base for medical, health and social care interventions for those with a cognitive or developmental disability is very sparse.  ...  Conclusions We developed a simple and objective screening tool to identify patients at increased risk of poor outcome for inclusion in to the CORKA randomized clinical trial, with a moderate discriminatory  ... 
doi:10.1186/s13063-017-1902-y fatcat:yt477zyq4vbi7cm6f3sozyl42u

27th Annual Conference of the International Society for Quality of Life Research

2020 Quality of Life Research  
Patient reports are transferred to the electronic patient records for immediate use in patient care.  ...  Aims: eRAPID is an online eHealth system for patients to report symptoms during cancer treatment.  ...  Aims: Telemedicine (TM) is applied to improve health care management of patients with, e.g., mental disorders or chronic conditions.  ... 
doi:10.1007/s11136-020-02626-y pmid:33068237 fatcat:nhcifgmpwzcbbnjc6nnjburb5i

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

Tina Garani-Papadatos, Pantelis Natsiavas, Marcel Meyerheim, Stefan Hoffmann, Christina Karamanidou, Sheila A Payne
This opportunity has been explored in the MyPal research project, which aims to assess a patient-centered service for palliative care relying on the adaptation and extension of digital health tools and  ...  This paper explores the ethical dimension of the opportunity to offer improved electronic patient-reported outcome (ePRO) systems addressing personal needs of pediatric cancer patients, their parents and  ...  The consortium's aim has been to design and evaluate a novel ePRO-based digital health platform in a palliative care context, addressing the personal care needs of both adult and pediatric cancer patients  ... 
doi:10.3389/fdgth.2022.730430 pmid:35373180 pmcid:PMC8971573 fatcat:mqj322pmdfdebmlw5noga6zesa

Supporting Research Excellence: May 2006 to September 2014

Women And Children's Health Research Institute
WCHRI facilitates the engagement of researchers with other stakeholders as collaborators and partners by applying the approach of community-based participatory research.  ...  Community-based participatory research is based on the premise that each partner contributes specific strengths, knowledge and experience needed to design and conduct a research project as well as translate  ... 
doi:10.7939/r3-9xdd-4849 fatcat:j3cugc3wkjcptd363putvuqdre