References
- Burns TM, Graham CD, Rose MR, et al. Quality of life and measures of quality of life in patients with neuromuscular disorders. Muscle Nerve. 2012;46:9–25.
- Graham C, Rose M, Grunfeld E, et al. A systematic review of quality of life in adults with muscle disease. J Neurol. 2011;258:1581–1592.
- Arnett ALH, Chamberlain J. Therapy for neuromuscular disorders. Curr Opin Genet Dev. 2009;19:290–297.
- Berard C, Payan C, Hodgkinson I, MFM Collaborative Study Group, et al. A motor function measure for neuromuscular diseases. Construction and validation study. Neuromuscul Disord. 2005;15:463–470.
- Lue YJ, Su CY, Yang RC, et al. Development and validation of a muscular dystrophy-specific functional rating scale. Clin Rehabil. 2006;20:804–817.
- Gordon P, Miller R, Moore D. ALSFRS-R. Amyotrophic lateral sclerosis and other motor neuron sisorders. 2004;5(Suppl): 90–93.
- Montes J, Levy G, Albert S, et al. Development and evaluation of a self-administered version of the ALSFRS-R. Neurology. 2006;67:1294–1296.
- Vandervelde L, Van den Bergh PYK, Goemans N, et al. ACTIVLIM: a rasch-built measure of activity limitations in children and adults with neuromuscular disorders. Neuromuscular Disord. 2007;17:459–469.
- Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology. 1983;33:1444–1452.
- Wynia K. Change in disability profile and quality of life in multiple sclerosis patients: a five-year longitudinal study using the multiple sclerosis impact profile (MSIP). Mul Scler J. 2012-5;18:654–661.
- Jopson NM, Moss-Morris R. The role of illness severity and illness representations in adjusting to multiple sclerosis. J Psychosom Res. 2003;54:503.
- Rose M, Sadjadi R, Weinman J, et al. Role of disease severity, illness perceptions, and mood on quality of life in muscle disease. Muscle Nerve. 2012;46:351–359.
- Stratford PW, Binkley JM, Stratford DM. Development and initial validation of the upper extremity functional scale. Physiother Can Fall. 2001;53:259–267.
- Binkley JM, Stratford PW, Lott SA, et al. The lower extremity functional scale (LEFS): Scale development, measurement properties, and clinical application. North American orthopaedic rehabilitation research network. Phys Ther. 1999;79:371–383.
- Rowland LP, McLeod JG. Classification of neuromuscular disorders. J Neurol Sci. 1994; 07124 Suppl:109–130.
- Lin C, Moseley A, Refshauge K, et al. The lower extremity functional scale has good clinimetric properties in people with ankle fracture. Phys Ther. 2009;89:580–588.
- Yeung TSM, Wessel J, Stratford P, et al. Reliability, validity, and responsiveness of the lower extremity functional scale for inpatients of an orthopaedic rehabilitation ward. J Orthop Sports Phys Ther. 2009;39:468–477.
- Gabel CP, Michener L, Burkett B, et al. The upper limb functional index: Development and determination of reliability, validity, and responsiveness. J Hand Ther. 2006;19:328–348.
- Hefford C, Abbott JH, Arnold R, et al. The patient-specific functional scale: Validity, reliability, and responsiveness in patients with upper extremity musculoskeletal problems. J Orthop Sports Phys Ther. 2012;42:56–65.
- Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol. 1993;46:1417–1432.
- Bos I, Kuks J, Wynia K. Development and testing psychometric properties of an ICF-based health measure: the neuromuscular disease impact profile. J Rehabil Med. 2015;47:445–453.
- Ware JE, Kemp JP, Buchner DA, et al. The responsiveness of disease-specific and generic health measures to changes in the severity of asthma among adults. Qual Life Res.1998;7:235–244.
- Kempen GI, Miedema I, Ormel J, et al. The assessment of disability with the Groningen activity restriction scale. conceptual framework and psychometric properties. Soc Sci Med. 1996;1243:1601–1610.
- Wynia K, Middel B, van Dijk JP, et al. The multiple sclerosis impact profile (MSIP). development and testing psychometric properties of an ICF-based health measure. Disabil Rehabil. 2008;30:261–274.
- The WHOQOL Group. Development of the world health organization WHOQOL-bref quality of life assessment. World Health Forum. 1998;28:551–558.
- McClelland GH. Nasty data: Unrully, ill-mannered observations can ruin your data. In: Reis HT, Judd CM, editors. Handbook of research methods in social and personality psychology. New York, NY: Cambridge University Press; 2000;23:608–627.
- Finch WH. Distribution of variables by method of outlier detection. Front Psychol. 2012;3:211. doi: 10.3389/fpsyg.2012.00211
- Muthén LK, Muthén BO. Mplus statistical analysis with latent variables; users guide [computer program]. 7th ed. Los Angeles, CA: Muthén & Muthén; 1998–2012.
- Flora DB, Curran PJ. An empirical evaluation of alternative methods of estimation for confirmatory factor analysis with ordinal data. Psychol Methods. 2004;9:466–491.
- Muthen B. Mplus technical appendices (1998–2004). Los Angeles, CA: Muthen & Muthen; 2004.
- Browne MW, Cudeck R. Alternative ways of assessing model fit. In: Bollen KA, Long JS, editors. Testing structural equation models. Newbury Park (CA): Sage; 1993.
- Sonderen v. E. Omgaan met ontbrekende gegevens in het bijzonder bij schaal items (how to handle missing data in particular scale items). Verpleegkunde, Nederlands-Vlaam Wetenschappelijk Tijdschrift Voor Verpleegkundigen. 2000;15(2):104–111.
- Nunnally JC. Bernstein IH., editors. Psychometric theory. 3rd ed. New York: McGRAW-HILL, INC.; 1994.
- Clark LWD. Constructing validity: basic issues in objective scale development. Psychol Assess. 1995;7:309–319.
- Hobart JC, Riazi A, Lamping DL, et al. Improving the evaluation of therapeutic interventions in multiple sclerosis: Development of a patient-based measure of outcome. Health Technol Assess. 2004;8:1–48.
- Polit DF BC, editor. Nursing research: principles and methods. Philadelphia, New York, Baltimore: Lippincott; 2004.
- Streiner DNG. Health measurement scales, a practical guide to their development and use. 4th ed. Oxford: Oxford University Press; 2008.
- Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale, NJ: Lawrence Erlbaum Associates; 1988.
- Luo N, Johnson JA, Shaw JW, et al. Relative efficiency of the EQ-5D, HUI2, and HUI3 index scores in measuring health burden of chronic medical conditions in a population health survey in the united states. Med Care. 2009;47:53–60.
- Andersen M, Johnson U, Lindwall M, Ivarsson A. To adjust or not adjust: Nonparametric effect sizes, confidence intervals, and real-world meaning. Psychol Sport Exerc. 2013;14:97–102.