AquaScouts: ePROs Implemented as a Serious Game for Children With Cancer to Support Palliative Care
Status PubMed-not-MEDLINE Language English Country Switzerland Media electronic-ecollection
Document type Journal Article
PubMed
34957461
PubMed Central
PMC8692290
DOI
10.3389/fdgth.2021.730948
Knihovny.cz E-resources
- Keywords
- childhood cancer, eHealth, mHealth, palliative care, patient reported outcomes, serious games,
- Publication type
- Journal Article MeSH
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.
Department of Paediatric Haematology and Oncology Hannover Medical School Hannover Germany
Institute of Applied Biosciences Centre for Research and Technology Hellas Thessaloniki Greece
Institute of Computer Science Foundation for Research and Technology Hellas Heraklion Greece
Serious Games Solutions Promotion Software GmbH Tübingen Germany
See more in PubMed
Erdmann F, Frederiksen LE, Bonaventure A, Mader L, Hasle H, Robison LL, et al. . Childhood cancer: survival, treatment modalities, late effects and improvements over time. Cancer Epidemiol. (2021) 71:101733. 10.1016/j.canep.2020.101733 PubMed DOI
Palmer S, Mitchell A, Thompson K, Sexton M. Unmet needs among adolescent cancer patients: a pilot study. Palliat Support Care. (2007) 5:127–34. 10.1017/S1478951507070198 PubMed DOI
Hoerger M, Greer JA, Jackson VA, Park ER, Pirl WF, El-Jawahri A, et al. . Defining the elements of early palliative care that are associated with patient-reported outcomes and the delivery of end-of-life care. J Clin Oncol. (2018) 36:1096–102. 10.1200/JCO.2017.75.6676 PubMed DOI PMC
World Health Organization . Cancer Pain Relief and Palliative Care in Children. Geneva: World Health Organization; (1998). Available online at: https://apps.who.int/iris/handle/10665/42001
Kracht CL, Joseph ED, Staiano AE. Video games, obesity, and children. Curr Obes Rep. (2020) 9:1–14. 10.1007/s13679-020-00368-z PubMed DOI PMC
Penedo FJ, Oswald LB, Kronenfeld JP, Garcia SF, Cella D, Yanez B. The increasing value of eHealth in the delivery of patient-centred cancer care. Lancet Oncol. (2020) 21:e240–51. 10.1016/S1470-2045(20)30021-8 PubMed DOI PMC
Sisk BA, Feudtner C, Bluebond-Langner M, Sourkes B, Hinds PS, Wolfe J. Response to suffering of the seriously ill child: a history of palliative care for children. Pediatrics. (2020) 145. 10.1542/peds.2019-1741 PubMed DOI PMC
Taylor J, Booth A, Beresford B, Phillips B, Wright K, Fraser L. Specialist paediatric palliative care for children and young people with cancer: a mixed-methods systematic review. Palliat Med. (2020) 34:731–75. 10.1177/0269216320908490 PubMed DOI PMC
Karamanidou C, Natsiavas P, Koumakis L, Marias K, Schera F, Schäfer M, et al. . Electronic patient-reported outcome–based interventions for palliative cancer care: a systematic and mapping review. JCO Clin Cancer Inform. (2020) 4:647–56. 10.1200/CCI.20.00015 PubMed DOI PMC
Johnson D, Deterding S, Kuhn KA, Staneva A, Stoyanov S, Hides L. Gamification for health and wellbeing: a systematic review of the literature. Internet Interv. (2016) 6:89–106. 10.1016/j.invent.2016.10.002 PubMed DOI PMC
Jibb LA, Stevens BJ, Nathan PC, Seto E, Cafazzo JA, Johnston DL, et al. . Implementation and preliminary effectiveness of a real-time pain management smartphone app for adolescents with cancer: a multicenter pilot clinical study. Pediatr Blood Cancer. (2017) 64:e26554. 10.1002/pbc.26554 PubMed DOI
Tomlinson D, Hyslop S, Stein E, Spiegler B, Vettese E, Kuczynski S, et al. . Development of mini-SSPedi for children 4–7 years of age receiving cancer treatments. BMC Cancer. (2019) 19:32. 10.1186/s12885-018-5210-z PubMed DOI PMC
Dupuis LL, Johnston DL, Baggott C, Hyslop S, Tomlinson D, Gibson P, et al. . Validation of the symptom screening in pediatrics tool in children receiving cancer treatments. J Natl Cancer Inst. (2018) 110:661–8. 10.1093/jnci/djx250 PubMed DOI PMC
Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQLTM in pediatric cancer: reliability and validity of the pediatric quality of life inventoryTM generic core scales, multidimensional fatigue scale, and cancer module. Cancer. (2002) 94:2090–106. 10.1002/cncr.10428 PubMed DOI
Rabin R, Gudex C, Selai C, Herdman M. From translation to version management: a history and review of methods for the cultural adaptation of the euroqol five-dimensional questionnaire. Value Heal. (2014) 17:70–6. 10.1016/j.jval.2013.10.006 PubMed DOI
Brédart A, Anota A, Young T, Tomaszwesji, Arraras JI. Phase III study of the European Organization for Research and Treatment of Cancer satisfaction with cancer care core questionnaire (EORTC PATSAT-C33) and specific complementary outpatient module (EORTC OUT-PATSAT7). Eur J Cancer Care. (2018) 27. PubMed
Stein REK, Riessman CK. The development of the Impact on Family Scale: preliminary findings. Medical Care. (1980) 18:465–72. PubMed
Meyerheim M, Karamanidou C, Payne S, Garani-Papadatos T, Sander A, Downing J, et al. . MyPal-Child study protocol: an observational prospective clinical feasibility study of the MyPal ePRO-based early palliative care digital system in paediatric oncology patients. BMJ Open. (2021) 11:e045226. 10.1136/bmjopen-2020-045226 PubMed DOI PMC
Meyerowitz-Katz G, Ravi S, Arnolda L, Feng X, Maberly G, Astell-Burt T. Rates of attrition and dropout in app-based interventions for chronic disease: systematic review and meta-analysis. J Med Internet Res. (2020) 22:e20283. 10.2196/20283 PubMed DOI PMC