Personalized Management of Fatigue in Individuals With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Using a Smart Digital mHealth Solution: Protocol for a Participatory Design Approach.

Autor:	Dorronzoro-Zubiete E; Electronic Technology Department, Universidad de Sevilla, Sevilla, Spain., Castro-Marrero J; Research Unit in ME/CFS and Long COVID, Division of Rheumatology, Vall d'Hebron Research Institute, Universitat Autònoma de Barcelona, Barcelona, Spain., Ropero J; Electronic Technology Department, Universidad de Sevilla, Sevilla, Spain., Sevillano-Ramos JL; Architecture and Technology Department, Universidad de Sevilla, Sevilla, Spain., Dolores Hernández M; Electronic Technology Department, Universidad de Sevilla, Sevilla, Spain., Sanmartin Sentañes R; Research Unit in ME/CFS and Long COVID, Division of Rheumatology, Vall d'Hebron Research Institute, Universitat Autònoma de Barcelona, Barcelona, Spain.; Division of Rheumatology, Vall d'Hebron University Hospital, Universitat Autònoma de Barcelona, Barcelona, Spain., Alegre-Martin J; Research Unit in ME/CFS and Long COVID, Division of Rheumatology, Vall d'Hebron Research Institute, Universitat Autònoma de Barcelona, Barcelona, Spain.; Division of Rheumatology, Vall d'Hebron University Hospital, Universitat Autònoma de Barcelona, Barcelona, Spain., Launois-Obregón P; Physical Medicine and Rehabilitation Department, Vall d'Hebron University Hospital, Barcelona, Spain.; Department of Medicine, Universitat Autònoma de Barcelona, Barcelona, Spain., Martin-Garrido I; Unidad de Enfermedades Autoinmunes y Minoritarias, Servicio de Medicina Interna, Virgen del Rocio University Hospital, Sevilla, Spain., Luque Budia A; Salud Mental, Unidad de Gestión Clínica, Virgen del Rocio University Hospital, Sevilla, Spain., Lacalle-Remigio JR; Preventive Medicine and Public Health Department, Universidad de Sevilla, Sevilla, Spain., Béjar Prado L; Preventive Medicine and Public Health Department, Universidad de Sevilla, Sevilla, Spain., Rivera Romero O; Electronic Technology Department, Universidad de Sevilla, Sevilla, Spain.
Jazyk:	angličtina
Zdroj:	JMIR research protocols [JMIR Res Protoc] 2024 Apr 12; Vol. 13, pp. e50157. Date of Electronic Publication: 2024 Apr 12.
DOI:	10.2196/50157
Abstrakt:	Background: Fatigue is the most common symptom in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID, impacting patients' quality of life; however, there is currently a lack of evidence-based context-aware tools for fatigue self-management in these populations. Objective: This study aimed to (1) address fatigue in ME/CFS and long COVID through the development of digital mobile health solutions for self-management, (2) predict perceived fatigue severity using real-time data, and (3) assess the feasibility and potential benefits of personalized digital mobile health solutions. Methods: The MyFatigue project adopts a patient-centered approach within the participatory health informatics domain. Patient representatives will be actively involved in decision-making processes. This study combines inductive and deductive research approaches, using qualitative studies to generate new knowledge and quantitative methods to test hypotheses regarding the relationship between factors like physical activity, sleep behaviors, and perceived fatigue in ME/CFS and long COVID. Co-design methods will be used to develop a personalized digital solution for fatigue self-management based on the generated knowledge. Finally, a pilot study will evaluate the feasibility, acceptance, and potential benefits of the digital health solution. Results: The MyFatigue project opened to enrollment in November 2023. Initial results are expected to be published by the end of 2024. Conclusions: This study protocol holds the potential to expand understanding, create personalized self-management approaches, engage stakeholders, and ultimately improve the well-being of individuals with ME/CFS and long COVID. International Registered Report Identifier (irrid): PRR1-10.2196/50157. (©Enrique Dorronzoro-Zubiete, Jesús Castro-Marrero, Jorge Ropero, José Luis Sevillano-Ramos, María Dolores Hernández, Ramon Sanmartin Sentañes, Jose Alegre-Martin, Patricia Launois-Obregón, Isabel Martin-Garrido, Asuncion Luque Budia, Juan R Lacalle-Remigio, Luis Béjar Prado, Octavio Rivera Romero. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 12.04.2024.)
Databáze:	MEDLINE
Externí odkaz:	Zobrazit plný text záznamu