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Muscle Nerve. 2011 Jul;44(1):30-5. doi: 10.1002/mus.22007.

An interactive voice response diary for patients with non-dystrophic myotonia.

Author information

  • 1Department of Neurology, University of Rochester Medical Center, Rochester, New York, USA.

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.

Copyright © 2011 Wiley Periodicals, Inc.

PMID:
21674518
[PubMed - indexed for MEDLINE]
PMCID:
PMC3233757
Free PMC Article

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