INTERNATIONAL CLINIMETRIC EVALUATION OF THE MG-QOL15, RESULTING IN SLIGHT REVISION AND SUBSEQUENT VALIDATION OF THE MG-QOL15R

被引：100

作者：

Burns, Ted M. ^{[1
]}

Sadjadi, Reza ^{[2
]}

Utsugisawa, Kimiaki ^{[3
]}

Gwathmey, Kelly G. ^{[1
]}

Joshi, Amruta ^{[1
]}

Jones, Sarah ^{[1
]}

Bril, Vera ^{[4
]}

Barnett, Carolina ^{[4
]}

Guptill, Jeffrey T. ^{[5
]}

Sanders, Donald B. ^{[5
]}

Hobson-Webb, Lisa ^{[5
]}

Juel, Vern C. ^{[5
]}

Massey, Janice ^{[5
]}

Gable, Karissa L. ^{[5
]}

Silvestri, Nicholas J. ^{[6
]}

Wolfe, Gil ^{[6
]}

Cutter, Gary ^{[7
]}

Nagane, Yuriko ^{[3
]}

Murai, Hiroyuki ^{[8
]}

Masuda, Masayuki ^{[9
]}

Farrugia, Maria Elena ^{[10
]}

Carmichael, Caroline ^{[10
]}

Birnbaum, Simone ^{[11
]}

Hogrel, Jean-Yves ^{[11
]}

Nafissi, Shahriar ^{[12
]}

Fatehi, Farzad ^{[12
]}

Ou, Changyi ^{[13
]}

Liu, Weibin ^{[13
]}

Conaway, Mark ^{[1
]}

机构：

[1] Univ Virginia, Dept Neurol, Charlottesville, VA 22908 USA

[2] Univ Rochester, Rochester, NY USA

[3] Hanamaki Gen Hosp, Hanamaki, Japan

[4] Toronto Gen Hosp, Toronto, ON, Canada

[5] Duke Univ, Durham, NC USA

[6] SUNY Buffalo, Buffalo, NY USA

[7] Univ Alabama Birmingham, Birmingham, AL USA

[8] Kyushu Univ, Neurol Inst, Fukuoka, Japan

[9] Tokyo Med Univ, Tokyo, Japan

[10] Southern Gen Hosp, Inst Neurol Sci, Glasgow, Lanark, Scotland

[11] GH Pitie Salpetriere, Inst Myol, Paris, France

[12] Univ Tehran Med Sci, Shariati Hosp, Tehran, Iran

[13] Sun Yat Sen Univ, Affiliated Hosp 1, Guangzhou, Guangdong, Peoples R China

来源：

MUSCLE & NERVE | 2016年 / 54卷 / 06期

关键词：

MG-QOL15; MG-QOL15r; myasthenia gravis; myasthenia; quality of life; Rasch analysis; revised MG-QOL15; QUALITY-OF-LIFE; MYASTHENIA-GRAVIS;

D O I：

10.1002/mus.25198

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

Introduction: The MG-QOL15 is a validated, health-related quality of life (HRQOL) measure for myasthenia gravis (MG). Widespread use of the scale gave us the opportunity to further analyze its clinimetric properties. Methods: We first performed Rasch analysis on > 1,300 15-item Myasthenia Gravis Quality of Life scale (MG-QOL15) completed surveys. Results were discussed during a conference call with specialists and biostatisticians. We decided to revise 3 items and prospectively evaluate the revised scale (MG-QOL15r) using either 3, 4, or 5 responses. Rasch analysis was then performed on > 1,300 MG-QOL15r scales. Results: The MGQOL15r performed slightly better than the MG-QOL15. The 3-response option MG-QOL15r demonstrated better clinimetric properties than the 4- or 5-option scales. Relative distributions of item and person location estimates showed good coverage of disease severity. Conclusions: The MG-QOL15r is now the preferred HRQOL instrument for MG because of improved clinimetrics and ease of use. This revision does not negate previous studies or interpretations of results using the MG-QOL15.

引用

页码：1015 / 1022

页数：8

共 16 条

[1] Changes in quality of life scores with intravenous immunoglobulin or plasmapheresis in patients with myasthenia gravis [J].

Barnett, Carolina ;

Wilson, Graham ;

Barth, David ;

Katzberg, Hans D. ;

Bril, Vera .

JOURNAL OF NEUROLOGY NEUROSURGERY AND PSYCHIATRY, 2013, 84 (01) :94-97

[2] EFFICACY OF PREDNISONE FOR THE TREATMENT OF OCULAR MYASTHENIA (EPITOME): A RANDOMIZED, CONTROLLED TRIAL [J].

Benatar, Michael ;

McDermott, Michael P. ;

Sanders, Donald B. ;

Wolfe, Gil I. ;

Barohn, Richard J. ;

Nowak, Richard J. ;

Hehir, Michael ;

Juel, Vern ;

Katzberg, Hans ;

Tawil, Rabi .

MUSCLE & NERVE, 2016, 53 (03) :363-369

[3] Less is more, or almost as much: A 15-item quality-of-life instrument for myasthenia gravis [J].

Burns, Ted M. ;

Conaway, Mark R. ;

Cutter, Gary R. ;

Sanders, Donald B. .

MUSCLE & NERVE, 2008, 38 (02) :957-963

[4] THE BEST OF BOTH WORLDS: USING PATIENT-REPORTED PLUS PHYSICIAN-SCORED MEASURES DURING THE EVALUATION OF MYASTHENIA GRAVIS [J].

Burns, Ted M. .

MUSCLE & NERVE, 2016, 53 (01) :3-4

[5] THE MG-QOL15 FOR FOLLOWING THE HEALTH-RELATED QUALITY OF LIFE OF PATIENTS WITH MYASTHENIA GRAVIS [J].

Burns, Ted M. ;

Grouse, C. K. ;

Wolfe, Gil I. ;

Conaway, Mark R. ;

Sanders, Donald B. .

MUSCLE & NERVE, 2011, 43 (01) :14-18

[6] CONSTRUCT AND CONCURRENT VALIDATION OF THE MG-QOL15 IN THE PRACTICE SETTING [J].

Burns, Ted M. ;

Grouse, C. K. ;

Conaway, Mark R. ;

Sanders, Donald B. .

MUSCLE & NERVE, 2010, 41 (02) :219-226

[7] Neuro-QOL Brief measures of health-related quality of life for clinical research in neurology [J].

Cella, D. ;

Lai, J-S. ;

Nowinski, C. J. ;

Victorson, D. ;

Peterman, A. ;

Miller, D. ;

Bethoux, F. ;

Heinemann, A. ;

Rubin, S. ;

Cavazos, J. E. ;

Reder, A. T. ;

Sufit, R. ;

Simuni, T. ;

Holmes, G. L. ;

Siderowf, A. ;

Wojna, V. ;

Bode, R. ;

McKinney, N. ;

Podrabsky, T. ;

Wortman, K. ;

Choi, S. ;

Gershon, R. ;

Rothrock, N. ;

Moy, C. .

NEUROLOGY, 2012, 78 (23) :1860-1867

[8]

Cella D F, 1990, Oncology (Williston Park), V4, P29

[9] THE MODIFIED RANKIN SCALE TO ASSESS DISABILITY IN MYASTHENIA GRAVIS: COMPARING WITH OTHER TOOLS [J].

Farrugia, Maria E. ;

Carmichael, Caroline ;

Cupka, Bryan J. ;

Warder, Judy ;

Brennan, Kathryn M. ;

Burns, Ted M. .

MUSCLE & NERVE, 2014, 50 (04) :501-507

[10] MYASTHENIA GRAVIS: SLEEP QUALITY, QUALITY OF LIFE, AND DISEASE SEVERITY [J].

Hernandez Martinez De Lapiscina, Elena ;

Erro Aguirre, Maria Elena ;

Ayuso Blanco, Teresa ;

Jerico Pascual, Ivonne .

MUSCLE & NERVE, 2012, 46 (02) :174-180

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