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Lookup NU author(s): Victoria Macrae, Dr Kristen Davies, Professor Fai Ng
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© Adrien Bennetot, Rana Zia Ur Rehman, Robbin Romijnders, Zhi Li, Victoria Macrae, Kristen Davies, Wan-Fai Ng, Walter Maetzler, Jennifer Kudelka, Hanna Hildesheim, Kirsten Emmert, Emma Paulides, C Janneke van der Woude, Ralf Reilmann, Svenja Aufenberg, Meenakshi Chatterjee, Nikolay V Manyakov, Clémence Pinaud, Stefan Avey. Background: Fatigue is a prevalent and debilitating symptom in many chronic conditions, including immune-mediated inflammatory diseases (IMIDs) and neurodegenerative diseases (NDDs). Fatigue often fluctuates significantly within and between days, yet traditional patient-reported outcomes (PROs) typically rely on recall periods of a week or more, potentially missing these short-term variations. The development of digital tools, such as electronic diaries (eDiaries), offers a unique opportunity to collect granular, real-time data. However, the feasibility, adherence, and comparability of eDiary-based assessments to established PROs require further investigation. Objective: This study aimed to evaluate the feasibility and acceptability of using a high-frequency eDiary to capture intraday variability in fatigue and to compare eDiary data with scores obtained from the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F), a validated weekly recall PRO. Methods: Data were collected from 159 participants enrolled in the IDEA-FAST (Identifying Digital Endpoints to Assess Fatigue, Sleep and Activities in Daily Living in Neurodegenerative Disorders and Immune-Mediated Inflammatory Diseases) feasibility study; a 4-week prospective observational study conducted at 4 European centers. Participants included individuals with NDDs (n=39), IMIDs (n=78), and healthy volunteers (n=42). Participants used an eDiary to report their physical and mental fatigue levels up to 4 times daily on a 7-point Likert scale (0=low and 6=high). Adherence was calculated as the proportion of completed eDiary entries relative to the total expected entries. Correlations between averaged eDiary scores and weekly FACIT-F scores were analyzed. Results: Adherence to the eDiary protocol was 5505/8880 (61.99%) overall, varying by cohort, with the highest adherence (1117/1200, 93.07%) observed in the primary Sjögren syndrome cohort and the lowest adherence in the Parkinson disease (410/960, 42.7%) and Huntington disease (320/720, 44.4%) cohorts. The average adherence was 430/1680 (43.45%) in the NDD cohorts and 3367/4560 (73.84%) in the IMID cohorts. Fatigue levels showed clear diurnal variation, with significantly higher fatigue reported in the evening compared to the morning (P<.001). A moderate correlation (Spearman=0.46, P<.001) was observed between eDiary fatigue scores and FACIT-F scores, with stronger cohort-specific associations for certain FACIT-F items. These results indicate that eDiaries provide complementary insights to weekly PROs by capturing intraday fluctuations in fatigue. Conclusions: This study demonstrates the feasibility, acceptability, and validity of using high-frequency eDiaries to assess fatigue in chronic conditions. By effectively detecting intra- and interday fatigue variations, eDiaries complement traditional PROs such as FACIT-F, offering a more nuanced understanding of fatigue patterns. Future research should explore optimized eDiary protocols to balance participant burden with data granularity.
Author(s): Bennetot A, Ur Rehman RZ, Romijnders R, Li Z, Macrae V, Davies K, Ng W-F, Maetzler W, Kudelka J, Hildesheim H, Emmert K, Paulides E, van der Woude CJ, Reilmann R, Aufenberg S, Chatterjee M, Manyakov NV, Pinaud C, Avey S
Publication type: Article
Publication status: Published
Journal: JMIR Formative Research
Year: 2025
Volume: 9
Online publication date: 05/05/2025
Acceptance date: 25/01/2025
Date deposited: 19/05/2025
ISSN (electronic): 2561-326X
Publisher: JMIR Publications Inc.
URL: https://doi.org/10.2196/65879
DOI: 10.2196/65879
Data Access Statement: The datasets presented in this paper are not readily available because of the sensitive nature of the data. This study's data will be made available upon request for validation purposes, subject to the signing of a suitable data sharing agreement. Validation can only take place on the IDEA-FAST (Identifying Digital Endpoints to Assess Fatigue, Sleep and Activities in Daily Living in Neurodegenerative Disorders and Immune-Mediated Inflammatory Diseases) data platform which supports all necessary statistical software tools. Requests to access the datasets should be directed to the IDEA-FAST website's contact page (https://idea-fast.eu/contact/ )
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