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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.
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Introduction: The main objective is to delimit the cognitive dysfunction associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in adult patients by applying the Continuous Performance Test (CPT3™). Additionally, provide empirical evidence on the usefulness of this computerized neuropsychological test to assess ME/CFS. Method: The final sample (n = 225; 158 Patients/67 Healthy controls) were recruited in a Central Sensitization Syndromes (CSS) specialized unit in a tertiary hospital. All participants were administered this neuropsychological test. Results: There were significant differences between ME/CFS and healthy controls in all the main measures of CPT3™. Mainly, patients had a worse indicator of inattentiveness, sustained attention, vigilance, impulsivity, slow reaction time, and more atypical T-scores, which is associated with a likelihood of having a disorder characterized by attention deficits, such as Attention Deficit Hyperactivity Disorder (ADHD). In addition, relevant correlations were obtained between the CPT3™ variables in the patient's group. The most discriminative indicators of ME/CFS patients were Variability and Hit Reaction Time, both measures of response speed. Conclusion: The CPT3™ is a helpful tool to discriminate neurocognitive impairments from attention and response speed in ME/CFS patients, and it could be used as a marker of ME/CFS severity for diagnosing or monitoring this disease.
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BACKGROUND: Although mHealth tools have great potential for health interventions, few experimental studies report on their use by people with spinal cord injuries in physical activity. OBJECTIVE: The main objective of this study was to analyze the effect of the ParaSportAPP on different physical and psychological variables in people with paraplegia. METHODS: Fourteen of these subjects made up the final sample. All the participants performed two pre-tests (control period) and a post-test with 8 months between the evaluations (COVID-19 broke out between pre-test 2 and the post-test). The ParaSportAPP was installed on their smartphones when they performed pre-test 2. The same tests were performed in the same order in all the evaluations: (i) the questionnaires PASIPD, HADS, RS-25; SCIM III and AQoL-8D, (ii) respiratory muscle strength, (iii) spirometry and (iv) cardiopulmonary exercise test. RESULTS: The results showed no differences in any of the variables studied between the measurement times. CONCLUSIONS: Although none of the variables experienced improvements, the ParaSportAPP mobile application was able to lessen the impact of the pandemic on the variables studied.
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Objetivo: validar al español el Neurogenic Bowel Dysfunction score (NBD score) que cuantifica la severidad de la disfunción intestinal en pacientes con discapacidad por lesión neurológica central y la satisfacción con el manejo intestinal.Material59 pacientes, 30 pacientes afectados de discapacidad intestinal por lesión medular y 29 pacientes afectados de discapacidad intestinal por accidente vascular cerebral.ResultadosEl resultado de la fiabilidad del constructo de la traducción al español del NBD Score para todo el grupo de pacientes muestra una α de Cronbach para todas las variables de 0,970 y el resultado de la fiabilidad del NBD score para todo el grupo en el test-retest, mediante el coeficiente de correlación interclase fue 0,970 (95% IC 0,954-0,980).ConclusionesLa versión traducida al español del NBD score es una herramienta válida para ser utilizada en nuestro medio, permitirá un acercamiento más real a la situación de discapacidad de cada paciente en relación con la disfunción intestinal neurógena y conocer la intensidad de la afectación y la eficacia en su manejo mediante las diferentes propuestas terapéuticas. (AU)
Objective: to validate into Spanish the Neurogenic Bowel Dysfunction score (NBD score) that quantifies intestinal dysfunction severity in patients with disabilities due to central neurological injury and satisfaction with bowel management.Material59 patients, 30 patients affected by intestinal disability due to spinal cord injury and 29 patients with intestinal disability due to stroke.ResultsThe result of the reliability of the construction of the Spanish translation of the NBD score for the whole group of patients shows a Cronbach's α for all the variables of 0.970 and the result of the reliability of the NBD score for the whole group in test-retest, using the interclass correlation coefficient, was 0.970 (95% CI 0.954-0.980).ConclusionsThe Spanish version of the NBD score is a valid tool for use in our environment; it will allow a more real approach to the disability situation of each patient in relation to neurogenic intestinal dysfunction and knowledge of the degree and the involvement and effectiveness of management through different therapeutic proposals. (AU)
Subject(s)
Humans , Neurogenic Bowel/diagnosis , Neurogenic Bowel/etiology , Neurogenic Bowel/therapy , Spinal Cord Injuries/complications , Spinal Cord Injuries/diagnosis , Reproducibility of Results , TranslationsABSTRACT
OBJECTIVE: to validate into Spanish the Neurogenic Bowel Dysfunction score (NBD score) that quantifies intestinal dysfunction severity in patients with disabilities due to central neurological injury and satisfaction with bowel management. MATERIAL: 59 patients, 30 patients affected by intestinal disability due to spinal cord injury and 29 patients with intestinal disability due to stroke. RESULTS: The result of the reliability of the construction of the Spanish translation of the NBD score for the whole group of patients shows a Cronbach's α for all the variables of 0.970 and the result of the reliability of the NBD score for the whole group in test-retest, using the interclass correlation coefficient, was 0.970 (95% CI 0.954-0.980). CONCLUSIONS: The Spanish version of the NBD score is a valid tool for use in our environment; it will allow a more real approach to the disability situation of each patient in relation to neurogenic intestinal dysfunction and knowledge of the degree and the involvement and effectiveness of management through different therapeutic proposals.
