Myotonic Dystrophy Health Index: Initial evaluation of a disease‐specific outcome measure. Issue 6 (June 2014)

• Record Type: Journal Article
• Authors: Heatwole, Chad; Bode, Rita; Johnson, Nicholas; Dekdebrun, Jeanne; Dilek, Nuran; Heatwole, Mark; Hilbert, James E.; Luebbe, Elizabeth; Martens, William; Mcdermott, Michael P.; Rothrock, Nan; Thornton, Charles; Vickrey, Barbara G.; Victorson, David; Moxley, Richard
• Is Part Of: Muscle & nerve. Volume 49:Issue 6(2014:Jun.)
• Page Start: 906
• Page End: 914
• Publication Date: 2014-06
• Subjects: Neuromuscular diseases -- Periodicals; Muscles -- Periodicals; Nerves -- Periodicals; 616.74
• DOI: 10.1002/mus.24097
• Languages: English
• ISSNs: 0148-639X

Abstract

<abstract abstract-type="main"> <title>ABSTRACT</title> <p> <italic>Introduction</italic>: In preparation for clinical trials we examine the validity, reliability, and patient understanding of the Myotonic Dystrophy Health Index (MDHI). <italic>Methods</italic>: Initially we partnered with 278 myotonic dystrophy type‐1 (DM1) patients and identified the most relevant questions for the MDHI. Next, we used factor analysis, patient interviews, and test–retest reliability assessments to refine and evaluate the instrument. Lastly, we determined the capability of the MDHI to differentiate between known groups of DM1 participants. <italic>Results</italic>: Questions in the final MDHI represent 17 areas of DM1 health. The internal consistency was acceptable in all subscales. The MDHI had a high test–retest reliability (ICC = 0.95) and differentiated between DM1 patient groups with different disease severities. <italic>Conclusions</italic>: Initial evaluation of the MDHI provides evidence that it is valid and reliable as an outcome measure for assessing patient‐reported health. These results suggest that important aspects of DM1 health may be measured effectively using the MDHI. <italic>Muscle Nerve</italic><bold>49</bold>: 906–914, 2014</p> </abstract>