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Dorronzoro-Zubiete E, Castro-Marrero J, Ropero Rodriguez J, Sevillano-Ramos JL, Dolores Hernández M, Sanmartin Sentañes R, Alegre Martin J, Launois P, Martin Garrido I, Luque Budia A, Ramon Lacalle J, Béjar Prado L, Rivera Romero O
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
Personalized Just-In-Time Management of Fatigue in Individuals with ME/CFS and long COVID using a Smart Context-Aware Digital mHealth Solution: Protocol for a Participatory Design Approach
Enrique Dorronzoro-Zubiete;
Jesús Castro-Marrero;
Jorge Ropero Rodriguez;
José Luis Sevillano-Ramos;
María Dolores Hernández;
Ramon Sanmartin Sentañes;
Jose Alegre Martin;
Patricia Launois;
Isabel Martin Garrido;
Asuncion Luque Budia;
Juan Ramon Lacalle;
Luis Béjar Prado;
Octavio Rivera Romero
ABSTRACT
Background:
Fatigue is the most common symptom in ME/CFS and long COVID impacting the 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 mHealth solutions for self-management, (2) predicting perceived fatigue severity using real-time data, and (3) assessing the feasibility and potential benefits of personalized digital mHealth solutions
Methods:
The MyFatigue project adopts a patient-centred 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, utilizing qualitative studies to generate new knowledge and quantitative methods to test hypotheses regarding the relationship between factors like physical activity, sleep behaviours, and perceived fatigue in ME/CFS and long COVID. Co-design methods will be employed 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:
Fatigue study opened to enrolment 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.
Citation
Please cite as:
Dorronzoro-Zubiete E, Castro-Marrero J, Ropero Rodriguez J, Sevillano-Ramos JL, Dolores Hernández M, Sanmartin Sentañes R, Alegre Martin J, Launois P, Martin Garrido I, Luque Budia A, Ramon Lacalle J, Béjar Prado L, Rivera Romero O
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