Brais B, Xie YG, Sanson M, Morgan K, Weissenbach J, Korczyn AD, et al. The oculopharyngeal muscular dystrophy locus maps to the region of the cardiac alpha and beta myosin heavy chain genes on chromosome 14q11.2-q13. Hum Mol Genet. 1995;4:429–34.
Article CAS PubMed Google Scholar
Becher MW, Morrison L, Davis LE, Maki WC, King MK, Bicknell JM, Reinert BL, Bartolo C, Bear DG. Oculopharyngeal muscular dystrophy in Hispanic New mexicans. JAMA. 2001;286:2437–40.
Article CAS PubMed Google Scholar
Blumen SC, Nisipeanu P, Sadeh M, Asherov A, Tomé FM, Korczyn AD. Clinical features of oculopharyngeal muscular dystrophy among Bukhara jews. Neuromuscul Disord. 1993;3:575–7.
Article CAS PubMed Google Scholar
Brais B. Oculopharyngeal muscular dystrophy. In: Amato AA, Griggs RC, editors. Handbook of Clinical Neurology, vol 101. The Netherlands: Elsevier;2011. p. 181–192. https://doi.org/10.1016/B978-0-08-045031-5.00014-1
Duranceau A, Forand MD, Fauteux JP. Surgery in oculopharyngeal muscular dystrophy. Am J Surg. 1980;139:33–39.
Kurtz NS, Cote C, Heatwole C, Gagnon C, Youssof S. Patient-reported disease burden in oculopharyngeal muscular dystrophy. Muscle Nerve. 2019;60:724–31. https://doi.org/10.1002/mus.26712
Krause-Bachand J, Koopman W. Living with oculopharyngeal muscular dystrophy: a phenomenological study. Can J Neurosci Nurs. 2008;30:35–9.
Young EC, Durant-Jones L. Gradual onset of dysphagia: a study of patients with oculopharyngeal muscular dystrophy. Dysphagia. 1997;12:196–201.
Article CAS PubMed Google Scholar
Côté C, Brais B, Batcho CS, Brisson JD, Youssof S, Allegue DR, et al. Introducing the Dysphagiameter: a novel patient-reported outcome measure for evaluating dysphagia in oculopharyngeal muscular dystrophy – from conceptual framework to initial development. Neuromuscul Disord. 2023;33:856–865. https://doi.org/10.1016/j.nmd.2023.09.001
Forgues C, Fortin J, Gagnon C, Brisson JD, Mathieu J, Brais B, et al. Nutritional risk in oculopharyngeal muscular dystrophy: beyond dysphagia. Can J Diet Pract Res. 2021;82(2):95–97. https://doi.org/10.3148/cjdpr-2021-003
Brisson JD, Gagnon C, Brais B, Cote I, Mathieu J. A study of impairments in oculopharyngeal muscular dystrophy. Muscle Nerve. 2020;62:201–7.
Mathieu J, Lapointe G, Brassard A, Tremblay C, Brais B, Rouleau GA, et al. A pilot study on upper esophageal sphincter dilatation for the treatment of dysphagia in patients with oculopharyngeal muscular dystrophy. Neuromuscul Disord. 1997;7(Suppl 1):S100–4.
European Medicines Agency (EMA). Reflection paper on the regulatory guidance for the use of health related quality of life (HRQL) measures in the evaluation of medicinal products. London: European Medicines Agency; 2005.
U. S. Department of Health and Human Services Food and Drugs Adminsitration, Center for Drug Evaluation and Research, Center for Biologics Evaluation and Research, Center for Devices Radiological Health. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims. FDA; 2024.
Côté C, Gagnon C, Youssof S, Kurtz NS, Brais B. The requirement for a disease-specific patient-reported outcome measure of dysphagia in oculopharyngeal muscular dystrophy. Muscle Nerve. 2019;59:445–50. https://doi.org/10.1002/mus.26405
Côté C, Fortin J, Brais B, Youssof S, Gagnon C. Cross-cultural adaptation of the SWAL-QOL and the Sydney Swallow Questionnaire (SSQ) into french-canadian and preliminary assessment for their use in an oculopharyngeal muscular dystrophy (OPMD) population. Qual Life Res. 2022;31:293–302. https://doi.org/10.1007/s11136-021-02915-0
Fortin M-F, Gagnon J, Gagnon J, Michaud C, Bourgault P. Fondements et étapes du processus de recherche: Méthodes quantitatives et qualitatives. 2e éd. Montréal: Chenelière éducation; 2010.
World Health Organization. Towards a common language for functioning, disability and health: The International Classification of Functioning, Disability and Health. 2002. https://cdn.who.int/media/docs/default-source/classification/icf/icfbeginnersguide.pdf?sfvrsn=eead63d3_4&download=true. Accessed February 2017.
Gervais M, Pépin G. TRIAGE: a new group technique gaining recognition in evaluation. Eval J Australas. 2002;2:45–9. https://doi.org/10.1177/1035719x0200200212
Linacre J. Sample size and item calibration stability. J Appl Meas. 2002:3(1):85–106.
Checkbox. https://www.checkbox.com/
Wallace KL, Middleton S, Cook IJ. Development and validation of a self-report symptom inventory to assess the severity of oralpharyngealdysphagia. Gastroenterology. 2000;118(4):678–87. https://doi.org/10.1016/s0016-5085(00)70137-5
Bouchard JP, Brais B, Brunet D, Gould PV, Rouleau GA. Recent studies on oculopharyngeal muscular dystrophy in Québec. Neuromuscul Disord. 1997;7(Suppl 1):S22–9.
Bouchard JP, Marcoux S, Gosselin F, Pineault D, Rouleau G. A simple test for the detection of the dysphagia in members of families with oculopharyngeal muscular dystrophy (OPMD). Can J Neurol Sci. 1992;19:296–7.
Cote C, Gagnon C, Brais B. Standard operating procedure for the 80 ml drinking test in OPMD. Groupe de recherche interdisciplinaire sur les maladies neuromusculaires (GRIMN). 2024. https://www.grimn.ca/
SurveyMonkey. https://www.surveymonkey.com/
Dillman DA, Smyth JD, Christian LM. Internet, phone, mail, and mixed mode surveys: the tailored design method. 4th ed. Hoboken, NJ, US: John Wiley & Sons Inc; 2014.
Speyer R, Cordier R, Farneti D, Nascimento W, Pilz W, Verin E, Walshe M, Woisard V. White Paper by the European Society for Swallowing Disorders: Screening and Non-instrumental Assessment for Dysphagia in adults. Dysphagia. 2022;37:333–49. https://doi.org/10.1007/s00455-021-10283-7
Hobart J, Cano S. Improving the evaluation of therapeutic interventions in multiple sclerosis: the role of new psychometric methods. Health Technol Assess. 2009;13:iii, ix-x, 1-177. https://doi.org/10.3310/hta13120
Penta M, Arnoul C, Decruynaere C. Développer et interpréter une échelle de mesure. Applications du modèle de Rasch. Wavre: Mardaga; 2005.
Petrillo J, Cano SJ, McLeod LD, Coon CD. Using classical test theory, item response theory, and Rasch measurement theory to evaluate patient-reported outcome measures: a comparison of worked examples. Value Health. 2015;18:25–34. https://doi.org/10.1016/j.jval.2014.10.005.
Andrich D, Marais I. A course in Rasch Measurement Theory: measuring in the Educational, Social and Health Sciences. Singapore: Springer Nature Singapore Pte Ltd; 2019.
Andrich D, Sheridan B, Kuo G. Interpreting RUMM2020: part II. Polytomous data. 3rd ed. Perth (WA): edn. RUMM Laboratory Pty Ltd; 2005.
Bond TG, Fox CM. Applying the Rasch model: Fundamental measurement in the human sciences, 2nd ed. Mahwah: Lawrence Erlbaum Associates Publishers; 2007.
Smith EV Jr. Detecting and evaluating the impact of multidimensionality using item fit statistics and principal component analysis of residuals. J Appl Meas. 2002;3:205–31.
Finger RP, Fenwick E, Pesudovs K, Marella M, Lamoureux EL, Holz FG. Rasch analysis reveals problems with multiplicative scoring in the macular disease quality of life questionnaire. Ophthalmology. 2012;119:2351–7. https://doi.org/10.1016/j.ophtha.2012.05.031.
Fisher WP Jr, Elbaum B, Coulter A. Reliability, precision, and measurement in the context of data from ability tests, surveys, and assessments. J Phys Conf Ser. 2010;238:012036. https://doi.org/10.1088/1742-6596/238/1/012036.
Tennant A, Conaghan PG. The Rasch measurement model in rheumatology: what is it and why use it? When should it be applied, and what should one look for. Rasch Paper? Arthritis Rheum. 2007;57:1358–62. https://doi.org/10.1002/art.23108.
Hajjar SE. Statistical analysis: internal-consistency reliability and construct validity. Int J Quant Qual Res. 2018;6:46–7.
Kline P. Psychometrics and psychology. London: Academic; 1979.
Tavakol M, Dennick R. Making sense of Cronbach’s alpha. Int J Med Educ. 2011;2:53–5. https://doi.org/10.5116/ijme.4dfb.8dfd.
Article PubMed PubMed Central Google Scholar
Terwee CB, Bot SDM, de Boer MR, Knol DL, Dekker J, Bouter LM, de Vet HCW. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60 1:34–42.
Costello A, Osborne J. Pract Assess Res Eval. 2005;10:1–9.
Prinsen CAC, Mokkink LB, Bouter LM, Alonso J, Patrick DL, de Vet HCW, et al. COSMIN guideline for systematic reviews of patient-reported outcome measures. Qual Life Res. 2018;27:1147–57. https://doi.org/10.1007/s11136-018-1798-3
Wolfe EW, Smith EV Jr. Instrument development tools and activities for measure validation using Rasch models: Part II-Validation activities. J Appl Meas. 2007;8:204–234.
Patel DA, Sharda R, Hovis KL, Nichols EE, Sathe N, Penson DF, Feurer ID, McPheeters ML, Vaezi MF, Francis DO. Patient-reported outcome measures in dysphagia: a systematic review of instrument development and validation. Dis Esophagus. 2017;30:1–23. https://doi.org/10.1093/dote/dow028.
Article CAS PubMed PubMed Central Google Scholar
Engelen L, van der Fontijn-Tekamp A. The influence of product and oral characteristics on swallowing. Arch Oral Biol. 2005;50:739–46. https://doi.org/10.1016/j.archoralbio.2005.01.004.
Guo Q. Understanding the oral processing of solid foods: insights from food structure. Compr Rev Food Sci Food Saf. 2021;20:2941–67. https://doi.org/10.1111/1541-4337.12745.
Grotkamp SL, Cibis WM, Nüchtern EAM, von Mittelstaedt G, Seger WKF. Personal factors in the international classification of functioning, disability and health: prospective evidence. Aust J Rehabil Couns. 2012;18:1–24. https://doi.org/10.1017/jrc.2012.4
Threats TT. Use of the ICF in dysphagia management. Semin Speech Lang. 2007;28:323–33. https://doi.org/10.1055/s-2007-986529
Benedict C, Hahn AL, Diefenbach MA, Ford JS. Recruitment via social media: advantages and potential biases. Digit Health. 2019;5:2055207619867223. https://doi.org/10.1177/2055207619867223.
留言 (0)