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Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study

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Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study

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dc.contributor.author Floch, Jacqueline es_ES
dc.contributor.author Vilarinho, Thomas es_ES
dc.contributor.author Zettl, Annabel es_ES
dc.contributor.author Ibáñez Sánchez, Gema es_ES
dc.contributor.author Calvo-Lerma, Joaquim es_ES
dc.contributor.author Stav, Erlend es_ES
dc.contributor.author Halland Haro, Peter es_ES
dc.contributor.author Lein Aalberg, Asbjorn es_ES
dc.contributor.author Fides Valero, Álvaro es_ES
dc.contributor.author Bayo-Monton, Jose Luis es_ES
dc.date.accessioned 2021-07-22T03:33:43Z
dc.date.available 2021-07-22T03:33:43Z
dc.date.issued 2020-07-08 es_ES
dc.identifier.uri http://hdl.handle.net/10251/169741
dc.description.abstract [EN] Background: Despite a large number of clinical trials aiming at evaluating the digital self-management of chronic diseases, there is little discussion about users¿ experiences with digital approaches. However, a good user experience is a critical factor for technology adoption. Understanding users¿ experiences can inform the design of approaches toward increased motivation for digital self-management. Objective: This study aimed to evaluate the self-management of cystic fibrosis (CF) with a focus on gastrointestinal concerns and the care of young patients. Following a user-centered design approach, we developed a self-management app for patients and parents and a web tool for health care professionals (HCPs). To evaluate the proposed solutions, a 6-month clinical trial was conducted in 6 European CF competence centers. This paper analyzes the user acceptance of the technology and the benefits and disadvantages perceived by the trial participants. Methods: A mixed methods approach was applied. Data were collected through 41 semistructured qualitative interviews of patients, parents, and HCPs involved in the clinical trial. In addition, data were collected through questionnaires embedded in the self-management app. Results: Support for enzyme dose calculation and nutrition management was found to be particularly useful. Patients and parents rapidly strengthened their knowledge about the treatment and increased their self-efficacy. Reported benefits include reduced occurrence of symptoms and enhanced quality of life. Patients and parents had different skills, requiring follow-up by HCPs in an introductory phase. HCPs valued obtaining precise information about the patients, allowing for more personalized advice. However, the tight follow-up of several patients led to an increased workload. Over time, as patient self-efficacy increased, patient motivation for using the app decreased and the quality of the reported data was reduced. Conclusions: Self-management enfolds a collaboration between patients and HCPs. To be successful, a self-management approach should be accepted by both parties. Through understanding behaviors and experiences, this study defines recommendations for a complex case¿the demanding treatment of CF. We identify target patient groups and situations for which the app is most beneficial and suggest focusing on these rather than motivating for regular app usage over a long time. We also advise the personalized supervision of patients during the introduction of the approach. Finally, we propose to develop guidance for HCPs to facilitate changes in practice. As personalization and technology literacy are factors found to influence the acceptance of digital self-management of other chronic diseases, it is relevant to consider the proposed recommendations beyond the case of CF. es_ES
dc.description.sponsorship The authors of this paper, on behalf of the MyCyFAPP consortium, acknowledge the European Union and the Horizon 2020 Research and Innovation Framework Programme for funding the project (ref. 643806). The authors would like to thank all project partners for their collaboration during participant recruitment and project management. Without the dedication of participants in terms of time, effort, and valuable input, this publication would not have been possible. The authors would like to thank all the participants who contributed to this work. es_ES
dc.language Inglés es_ES
dc.publisher JMIR Publications es_ES
dc.relation.ispartof JMIR mHealth and uHealth es_ES
dc.rights Reconocimiento (by) es_ES
dc.subject Mobile health es_ES
dc.subject MHealth es_ES
dc.subject Self-management es_ES
dc.subject User experience es_ES
dc.subject User acceptance es_ES
dc.subject Mixed methods study es_ES
dc.subject Cystic fibrosis es_ES
dc.subject Pediatrics es_ES
dc.subject.classification TECNOLOGIA DE ALIMENTOS es_ES
dc.title Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study es_ES
dc.type Artículo es_ES
dc.identifier.doi 10.2196/15896 es_ES
dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/643806/EU es_ES
dc.rights.accessRights Abierto es_ES
dc.contributor.affiliation Universitat Politècnica de València. Departamento de Tecnología de Alimentos - Departament de Tecnologia d'Aliments es_ES
dc.description.bibliographicCitation Floch, J.; Vilarinho, T.; Zettl, A.; Ibáñez Sánchez, G.; Calvo-Lerma, J.; Stav, E.; Halland Haro, P.... (2020). Users' Experiences of a Mobile Health Self-Management Approach for the Treatment of Cystic Fibrosis: Mixed Methods Study. JMIR mHealth and uHealth. 8(7):1-19. https://doi.org/10.2196/15896 es_ES
dc.description.accrualMethod S es_ES
dc.relation.publisherversion https://doi.org/10.2196/15896 es_ES
dc.description.upvformatpinicio 1 es_ES
dc.description.upvformatpfin 19 es_ES
dc.type.version info:eu-repo/semantics/publishedVersion es_ES
dc.description.volume 8 es_ES
dc.description.issue 7 es_ES
dc.identifier.eissn 2291-5222 es_ES
dc.identifier.pmid 32673237 es_ES
dc.identifier.pmcid PMC7381063 es_ES
dc.relation.pasarela S\415475 es_ES
dc.contributor.funder European Commission es_ES


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