2021
DOI: 10.1136/bmjopen-2020-045226
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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

Abstract: IntroductionElectronic 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 fo… Show more

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Cited by 11 publications
(18 citation statements)
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“…More specifically, Mini-SSPedi ( 12 ) and SSPedi ( 13 ) questionnaires were digitally adapted to collect symptom information, PedSQL ( 14 ) to report QoL impact of the patient, European Quality of Life 5 Dimensions 3 Level Version (EQ-5D-3L) ( 15 ) to report the QoL impact of the parents, and the European Organization for Research and Treatment of Cancer satisfaction with cancer care core questionnaire (EORTC PATSAT C33) ( 16 ) to evaluate the satisfaction of the parents with the treatment of their child and the Impact of Family Scale ( 17 ). These questionnaires are asked as a part of the game or via the “MyPal Carer App” along the specific clinical study protocol and the main research endpoints, which are published by ( 18 ). It should be highlighted that MyPal Carer App is a simple questionnaire answering mobile app being used by the parent (acting as a proxy) only when the patient cannot report him/herself.…”
Section: Methodsmentioning
confidence: 99%
“…More specifically, Mini-SSPedi ( 12 ) and SSPedi ( 13 ) questionnaires were digitally adapted to collect symptom information, PedSQL ( 14 ) to report QoL impact of the patient, European Quality of Life 5 Dimensions 3 Level Version (EQ-5D-3L) ( 15 ) to report the QoL impact of the parents, and the European Organization for Research and Treatment of Cancer satisfaction with cancer care core questionnaire (EORTC PATSAT C33) ( 16 ) to evaluate the satisfaction of the parents with the treatment of their child and the Impact of Family Scale ( 17 ). These questionnaires are asked as a part of the game or via the “MyPal Carer App” along the specific clinical study protocol and the main research endpoints, which are published by ( 18 ). It should be highlighted that MyPal Carer App is a simple questionnaire answering mobile app being used by the parent (acting as a proxy) only when the patient cannot report him/herself.…”
Section: Methodsmentioning
confidence: 99%
“…(60,61) A range of models of pediatric palliative care delivery developed globally, as well as mobile-phone health innovations such as the ICPCN Pain App and the MyPal game for reporting patient outcomes. (62) Research on pediatric palliative care grew rapidly with a PubMed search for papers on children's palliative care showing a 700% increase in publications in 2020 as compared to 2000.…”
Section: Developments Since 2000mentioning
confidence: 99%
“…The pediatric oncology departments of the University of Saarland as the coordinating center and Hannover Medical School in Germany as well as the University Hospital Brno in the Czech Republic run MyPal4Kids ( 22 ).…”
Section: Mypal4kidsmentioning
confidence: 99%
“…In this policy brief, we portray experiences and observations made in the course of setting up the currently running observational prospective clinical feasibility MyPal-Child study (MyPal4Kids) ( 22 ). Firstly, we provide an overview on the study and its context.…”
Section: Introductionmentioning
confidence: 99%