Characterizing Patient-Reported Fatigue Using Electronic Diaries in Neurodegenerative and Immune-Mediated Inflammatory Diseases: Observational Study
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.
Authors
- Clémence Pinaud (ORCID: https://orcid.org/0000-0002-3907-3288)
- Emma Paulides (ORCID: https://orcid.org/0000-0002-6180-2686)
- Kristen Davies (ORCID: https://orcid.org/0000-0003-2246-9048)
- Adrien Bennetot (ORCID: https://orcid.org/0000-0001-8232-8728)
- Victoria Macrae
- Ralf Reilmann (ORCID: https://orcid.org/0000-0002-5904-9517)
- Wan‐Fai Ng (ORCID: https://orcid.org/0000-0002-5539-388X)
- Hanna Hildesheim (ORCID: https://orcid.org/0000-0003-0359-250X)
- Svenja Aufenberg
- Walter Maetzler (ORCID: https://orcid.org/0000-0002-5945-4694)
- Kirsten Emmert (ORCID: https://orcid.org/0000-0001-7346-3581)
- Rana Zia Ur Rehman (ORCID: https://orcid.org/0000-0002-4885-7455)
- Meenakshi Chatterjee (ORCID: https://orcid.org/0000-0003-4548-8962)
- Jennifer Kudelka (ORCID: https://orcid.org/0000-0003-1136-9738)
- Nikolay V. Manyakov (ORCID: https://orcid.org/0000-0001-9037-1400)
- Robbin Romijnders (ORCID: https://orcid.org/0000-0002-2507-0924)
- Stefan Avey (ORCID: https://orcid.org/0000-0003-2768-4337)
- C. Janneke van der Woude (ORCID: https://orcid.org/0000-0003-3875-6957)
- Zhi Li (ORCID: https://orcid.org/0000-0002-9866-8396)
Institutions
- National Defense University (US)
- Johnson & Johnson (United States) (US)
- University of Münster (DE)
- University College Cork (IE)
- Newcastle upon Tyne Hospitals NHS Foundation Trust (GB)
- Erasmus MC (NL)
- Christian-Albrechts-Universität zu Kiel (DE)
- University Hospital Schleswig-Holstein (DE)
- NIHR Newcastle Biomedical Research Centre (GB)
- Johnson & Johnson (United Kingdom) (GB)
- Hertie Institute for Clinical Brain Research (DE)
- George Huntington Institute (DE)
- Newcastle University (GB)
- Erasmus University Rotterdam (NL)
- University of Lübeck (DE)
Publication Details
- Journal
- JMIR Formative Research
- Published
- 2025-05-05
- DOI
- https://doi.org/10.2196/65879
- Primary Topic
- Fibromyalgia and Chronic Fatigue Syndrome Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- European Federation of Pharmaceutical Industries and Associations
- European Commission