Developing the health state classification system for a condition-specific preference-based measure for patients with myasthenia gravis

被引:1
作者
Xu, Richard Huan [1 ,2 ]
Yu, Siyue [2 ]
Liu, Ji [3 ]
Zhang, Shuyang [4 ]
Dong, Dong [2 ,5 ]
机构
[1] Hong Kong Polytech Univ, Dept Rehabil Sci, Kowloon, Kowloon, Peoples R China
[2] Chinese Univ Hong Kong, JC Sch Publ Hlth & Primary Care, Shatin, Shatin, Peoples R China
[3] Beijing Aili Myasthenia Gravis Care Ctr, Beijing, Peoples R China
[4] Chinese Acad Med Sci & Peking Union Med Coll, Peking Union Med Coll Hosp, Dept Cardiol, Beijing 100730, Peoples R China
[5] Chinese Univ Hong Kong, Shenzhen Res Inst, Shenzhen, Guangdong, Peoples R China
关键词
Patient-reported outcome measure; condition-specific instrument; preference-based measure; myasthenia gravis; quality of life; NUMBER;
D O I
10.1080/09638288.2022.2120096
中图分类号
R49 [康复医学];
学科分类号
100215 ;
摘要
Purpose This study aimed to generate the health state classification system (HCS) of a condition-specific preference-based measure to capture the health-related quality of life (HRQoL) of patients with myasthenia gravis (MG) from the 15-item Myasthenia Gravis Quality of Life Scale (MG-QoL15r). Materials and methods An HCS was derived from the MG-QoL15r in a large sample of 1739 patients with MG based on psychometric analysis, including factor analysis, item response theory analysis, and discussions with experts. Reliability, construct and convergent validity, and item fit of the HCS were further assessed using another sample. Results The HCS has six dimensions: social activity, hobbies and fun activities, meeting family needs, work performance, mobility, and emotion, and it demonstrates good internal consistency reliability. The unidimensionality of the HCS was confirmed using confirmatory factor analysis. Satisfied convergent validity was supported by a significant association with the 12-item Short Form Survey (SF-12). Conclusions Based on a solid process of development and consultations with clinical professionals and patients, a valid MG-specific preference-based measure, MGQoL-6D, was developed. Further research will estimate the local preference weight to support the MG-related cost-utility analysis.IMPLICATION FOR REHABILITATION A new condition-specific health state classification system (HCS) named Myasthenia gravis Quality of Life Scale (MGQoL-6D) is proposed. MGQoL-6D classifies MG health states as a combination of six dimensions with three response levels. The dimensions of the HCS are social activity, hobbies and fun activity, family needs, work performance, mobility, and emotion. The HCS and the upcoming value set of the MGQoL-6D could support the cost-effectiveness analysis of MG-related clinical and rehabilitated interventions.
引用
收藏
页码:3366 / 3372
页数:7
相关论文
共 37 条
[1]  
[Anonymous], 1999, A handbook on the theory and methods of differential item functioning (DIF): logistic regression modeling as a unitary framework for binary and likert-type (ordinal) item scores
[2]   When to use the Bonferroni correction [J].
Armstrong, Richard A. .
OPHTHALMIC AND PHYSIOLOGICAL OPTICS, 2014, 34 (05) :502-508
[3]  
Baker FB, 2017, STAT SOC BEHAV SC, P1, DOI 10.1007/978-3-319-54205-8
[4]   An up-date on health-related quality of life in myasthenia gravis -results from population based cohorts [J].
Boldingh, M. I. ;
Dekker, L. ;
Maniaol, A. H. ;
Brunborg, C. ;
Lipka, A. F. ;
Niks, E. H. ;
Verschuuren, J. J. G. M. ;
Tallaksen, C. M. E. .
HEALTH AND QUALITY OF LIFE OUTCOMES, 2015, 13
[5]  
Brazier J., 2007, MEASURING VALUING HL
[6]   Developing and testing methods for deriving preference-based measures of health from condition-specific measures (and other patient-based measures of outcome) Introduction [J].
Brazier, J. E. ;
Rowen, D. ;
Mavranezouli, I. ;
Tsuchiya, A. ;
Young, T. ;
Yang, Y. ;
Barkham, M. ;
Ibbotson, R. .
HEALTH TECHNOLOGY ASSESSMENT, 2012, 16 (32) :1-+
[7]   PREFERENCE-BASED CONDITION-SPECIFIC MEASURES OF HEALTH: WHAT HAPPENS TO CROSS PROGRAMME COMPARABILITY? [J].
Brazier, John ;
Tsuchiya, Aki .
HEALTH ECONOMICS, 2010, 19 (02) :125-129
[8]   INTERNATIONAL CLINIMETRIC EVALUATION OF THE MG-QOL15, RESULTING IN SLIGHT REVISION AND SUBSEQUENT VALIDATION OF THE MG-QOL15R [J].
Burns, Ted M. ;
Sadjadi, Reza ;
Utsugisawa, Kimiaki ;
Gwathmey, Kelly G. ;
Joshi, Amruta ;
Jones, Sarah ;
Bril, Vera ;
Barnett, Carolina ;
Guptill, Jeffrey T. ;
Sanders, Donald B. ;
Hobson-Webb, Lisa ;
Juel, Vern C. ;
Massey, Janice ;
Gable, Karissa L. ;
Silvestri, Nicholas J. ;
Wolfe, Gil ;
Cutter, Gary ;
Nagane, Yuriko ;
Murai, Hiroyuki ;
Masuda, Masayuki ;
Farrugia, Maria Elena ;
Carmichael, Caroline ;
Birnbaum, Simone ;
Hogrel, Jean-Yves ;
Nafissi, Shahriar ;
Fatehi, Farzad ;
Ou, Changyi ;
Liu, Weibin ;
Conaway, Mark .
MUSCLE & NERVE, 2016, 54 (06) :1015-1022
[9]   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
[10]   A systematic review of population based epidemiological studies in Myasthenia Gravis [J].
Carr, Aisling S. ;
Cardwell, Chris R. ;
McCarron, Peter O. ;
McConville, John .
BMC NEUROLOGY, 2010, 10