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Myotonic Dystrophy Health Index: Initial evaluation of a disease‐specific outcome measure
Author(s) -
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
Publication year - 2014
Publication title -
muscle and nerve
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.025
H-Index - 145
eISSN - 1097-4598
pISSN - 0148-639X
DOI - 10.1002/mus.24097
Subject(s) - myotonic dystrophy , reliability (semiconductor) , internal consistency , medicine , physical therapy , disease , test (biology) , physical medicine and rehabilitation , clinical psychology , psychometrics , psychology , pathology , paleontology , power (physics) , physics , quantum mechanics , biology
: In preparation for clinical trials we examine the validity, reliability, and patient understanding of the Myotonic Dystrophy Health Index (MDHI). Methods : 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. Results : 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. Conclusions : 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. Muscle Nerve 49 : 906–914, 2014