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
BackgroundFatigue 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 popul...
| Main Authors: | , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
JMIR Publications
2024-04-01
|
| Series: | JMIR Research Protocols |
| Online Access: | https://www.researchprotocols.org/2024/1/e50157 |
| _version_ | 1797210157323649024 |
|---|---|
| author | 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 |
| author_facet | 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 |
| author_sort | Enrique Dorronzoro-Zubiete |
| collection | DOAJ |
| description |
BackgroundFatigue 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.
ObjectiveThis 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.
MethodsThe 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.
ResultsThe MyFatigue project opened to enrollment in November 2023. Initial results are expected to be published by the end of 2024.
ConclusionsThis 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 |
| first_indexed | 2024-04-24T10:06:08Z |
| format | Article |
| id | doaj.art-3b24307276084bdcb95718c915a9732f |
| institution | Directory Open Access Journal |
| issn | 1929-0748 |
| language | English |
| last_indexed | 2024-04-24T10:06:08Z |
| publishDate | 2024-04-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Research Protocols |
| spelling | doaj.art-3b24307276084bdcb95718c915a9732f2024-04-12T18:00:27ZengJMIR PublicationsJMIR Research Protocols1929-07482024-04-0113e5015710.2196/50157Personalized 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 ApproachEnrique Dorronzoro-Zubietehttps://orcid.org/0000-0001-8478-9851Jesús Castro-Marrerohttps://orcid.org/0000-0002-2481-3052Jorge Roperohttps://orcid.org/0000-0001-5445-0646José Luis Sevillano-Ramoshttps://orcid.org/0000-0002-1392-1832María Dolores Hernándezhttps://orcid.org/0000-0003-2597-1156Ramon Sanmartin Sentañeshttps://orcid.org/0000-0002-6415-6368Jose Alegre-Martinhttps://orcid.org/0000-0002-7582-7585Patricia Launois-Obregónhttps://orcid.org/0000-0001-8115-2564Isabel Martin-Garridohttps://orcid.org/0000-0001-5199-4373Asuncion Luque Budiahttps://orcid.org/0000-0002-1182-1299Juan R Lacalle-Remigiohttps://orcid.org/0000-0002-2648-0191Luis Béjar Pradohttps://orcid.org/0000-0001-5470-0537Octavio Rivera Romerohttps://orcid.org/0000-0001-7212-9805 BackgroundFatigue 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. ObjectiveThis 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. MethodsThe 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. ResultsThe MyFatigue project opened to enrollment in November 2023. Initial results are expected to be published by the end of 2024. ConclusionsThis 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)PRR1-10.2196/50157https://www.researchprotocols.org/2024/1/e50157 |
| spellingShingle | 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 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 JMIR Research Protocols |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| url | https://www.researchprotocols.org/2024/1/e50157 |
| work_keys_str_mv | AT enriquedorronzorozubiete personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT jesuscastromarrero personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT jorgeropero personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT joseluissevillanoramos personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT mariadoloreshernandez personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT ramonsanmartinsentanes personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT josealegremartin personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT patricialaunoisobregon personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT isabelmartingarrido personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT asuncionluquebudia personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT juanrlacalleremigio personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT luisbejarprado personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach AT octavioriveraromero personalizedmanagementoffatigueinindividualswithmyalgicencephalomyelitischronicfatiguesyndromeandlongcovidusingasmartdigitalmhealthsolutionprotocolforaparticipatorydesignapproach |