An interactive voice response diary for patients with Non-dystrophic myotonia

Jeffrey M. Statland, Yunxia Wang, Rachel Richesson, Brian Bundy, Laura Herbelin, Joe Gomes, Jaya Trivedi, Shannon Venance, Anthony Amato, Michael Hanna, Robert Griggs, Richard J. Barohn

Research output: Contribution to journalArticlepeer-review

20 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)30-35
Number of pages6
JournalMuscle and Nerve
Volume44
Issue number1
DOIs
StatePublished - Jul 1 2011

Keywords

  • Ion channel gene defects
  • Muscle disease
  • Myotonia
  • Nondystrophic myotonia
  • Patient-reported outcome measures

ASJC Scopus subject areas

  • Physiology
  • Clinical Neurology
  • Cellular and Molecular Neuroscience
  • Physiology (medical)

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