An interactive voice response diary for patients with non‐dystrophic myotonia
Open accessAbstract
Introduction: Non‐dystrophic myotonia (NDM) is caused by mutations in muscle chloride and sodium channels. Currently, there is no standardized instrument for documenting symptom frequency and severity in NDM. Methods: Subjects used an automated, interactive, telephone‐based voice response diary (IVR) to record frequency and severity of stiffness, weakness, pain, and tiredness once a week for 8 weeks, after their baseline visits. Results: We describe the IVR and report data on 76 subjects for a total of 385 person‐weeks. Overall there were 5.1 calls per subject. Forty‐eight subjects called in 5 or more times, and 14 called in 8 times. Stiffness was both the most frequent and severe symptom. Warm‐up and handgrip myotonia were associated with higher severity scores for stiffness. Conclusions: IVR is a convenient technology to allow patient reporting of repeated and real‐time symptom frequency and severity, and it is presently being used in a trial of mexiletine in NDM. Muscle Nerve 44: 30–35, 2011
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- Authors
- Statland, J. M., Wang, Y., Richesson, R., Bundy, B., Herbelin, L., Gomes, J., Trivedi, J., Venance, S., Amato, A., Hanna, M., Griggs, R., Barohn, R. J., & The Cinch Consortium
- Affiliations
- University of Rochester Medicine (US)
- University of Kansas Medical Center (US)
- University of South Florida (US)
- The University of Texas Southwestern Medical Center (US)
- London Health Sciences Centre (CA)
- Brigham and Women's Hospital (US)
- UCL Queen Square Institute of Neurology (GB)
- Corresponding author
- Barohn, Richard J.
- ORCID
- Venue
- Muscle & Nerve
- Publisher
- Wiley
- Published
- 2011-06-14
- Volume
- 44
- Issue
- 1
- Pages
- 30-35
- ISSN
- 0148-639X (ISSN-L)
- 1097-4598
- PMC
- PMC3233757
- OpenAlex
- W2002362182
- Cited by
- 30
- References
- 22
- Citations by year
- 2026: 2 · 2025: 1 · 2024: 2 · 2022: 3 · 2021: 2 · 2020: 4 · 2018: 2 · 2017: 2 · 2016: 2 · 2015: 1 · 2014: 2 · 2013: 2 · 2012: 4
- FWCI
- 1.17
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Muscle & Nerve (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- UCL Discovery (University College London) (submittedVersion)
- Funders
- National Institutes of Health (UL1TR000042)
- National Center for Research Resources (U54RR019259, M01RR023940, UL1RR024160, U54RR019482, RR019259)
- National Center for Advancing Translational Sciences
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Molecular Biology › Ion channel regulation and function
- Health Sciences › Medicine › Neurology › Neurological disorders and treatments
- Health Sciences › Medicine › Neurology › Botulinum Toxin and Related Neurological Disorders
- Keywords
- non-dystrophic myotonia, interactive voice response, symptom frequency and severity, muscle stiffness, patient-reported outcomes
- MeSH terms
- Adolescent, Adult, Aged, Child, Female, Humans, Longitudinal Studies, Male, Medical Records, Middle Aged, Myotonia, Severity of Illness Index, Telephone, Voice, Young Adult
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