1,550
Views
1
CrossRef citations to date
0
Altmetric
Assessment Procedure

Development and validation of the patient-reported “Facial Function Scale” for facioscapulohumeral muscular dystrophy

, , , , , , , , , & show all
Pages 1530-1535 | Received 10 Sep 2021, Accepted 11 Apr 2022, Published online: 16 May 2022

References

  • Mul K, Lassche S, Voermans NC, et al. What's in a name? The clinical features of facioscapulohumeral muscular dystrophy. Pract Neurol. 2016;16(3):201–207.
  • Mul K, Berggren KN, Sills MY, et al. Effects of weakness of orofacial muscles on swallowing and communication in FSHD. Neurology. 2019;92(9):e957–e963.
  • Bakker M, Schipper K, Geurts AC, et al. It's not just physical: a qualitative study regarding the illness experiences of people with facioscapulohumeral muscular dystrophy. Disabil Rehabil. 2017;39(10):978–986.
  • Schipper K, Bakker M, Abma T. Fatigue in facioscapulohumeral muscular dystrophy: a qualitative study of people's experiences. Disabil Rehabil. 2017;39(18):1840–1846.
  • Sezer S, Cup EHC, Roets-Merken LM, et al. Experiences of patients with facioscapulohumeral dystrophy with facial weakness: a qualitative study. Disabil Rehabil. 2021;1–8.
  • Loonen TGJ, Horlings CGC, Vincenten SCC, et al. Characterizing the face in facioscapulohumeral muscular dystrophy. J Neurol. 2021;268(4):1342–1350.
  • Weir AM, Pentland B, Crosswaite A, et al. Bell's palsy: the effect on self-image, mood state and social activity. Clin Rehabil. 1995;9(2):121–125.
  • Grimby G, Tennant A, Tesio L. The use of raw scores from ordinal scales: time to end malpractice? J Rehabil Med. 2012;44(2):97–98.
  • Wright BD, Linacre JM. Observations are always ordinal; measurements, however, must be interval. Arch Phys Med Rehabil. 1989;70(12):857–860.
  • 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 in a Rasch paper? Arthritis Rheum. 2007;57(8):1358–1362.
  • Boone WJ. Rasch analysis for instrument development: why, when, and how? CBE Life Sci Educ. 2016;15(4).
  • Mul K, Horlings CGC, Faber CG, et al. Rasch analysis to evaluate the motor function measure for patients with facioscapulohumeral muscular dystrophy. Int J Rehabil Res. 2021;44(1):38–44.
  • Hermans MC, Faber CG, De Baets MH, et al. Rasch-built myotonic dystrophy type 1 activity and participation scale (DM1-Activ). Neuromuscul Disord. 2010;20(5):310–318.
  • Draak TH, Vanhoutte EK, van Nes SI, et al. Changing outcome in inflammatory neuropathies: Rasch-comparative responsiveness. Neurology. 2014;83(23):2124–2132.
  • Streiner DL, Norman GR. Health measurement scales. A practical guide to their development and use. 2nd ed. New York: Oxford University Press; 1998.
  • Mul K, Voermans NC, Lemmers R, et al. Phenotype–genotype relations in facioscapulohumeral muscular dystrophy type 1. Clin Genet. 2018;94(6):521–527.
  • Vanhoutte EK, Hermans MC, Faber CG, et al. Rasch-ionale for neurologists. J Peripher Nerv Syst. 2015;20(3):260–268.
  • Linacre JM. Optimizing rating scale category effectiveness. J Appl Meas. 2002;3(1):85–106.
  • 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(2):205–231.
  • Andrich D, Sheridan B, Luo G. Rasch models for measurement: RUMM2030. Perth: RUMM Laboratory; 2010.
  • Wijayanto F, Mul K, Groot P, et al. Semi-automated Rasch analysis using in-plus-out-of-questionnaire log likelihood. Br J Math Stat Psychol. 2020;74(2):313–339.
  • Baylor C, Yorkston K, Eadie T, et al. The Communicative Participation Item Bank (CPIB): item bank calibration and development of a disorder-generic short form. J Speech Lang Hear Res. 2013;56(4):1190–1208.
  • Lamperti C, Fabbri G, Vercelli L, et al. A standardized clinical evaluation of patients affected by facioscapulohumeral muscular dystrophy: the FSHD clinical score. Muscle Nerve. 2010;42(2):213–217.
  • Bland JM, Altman DG. Multiple significance tests: the Bonferroni method. BMJ. 1995;310(6973):170.
  • Butz M, Koch MC, Muller-Felber W, et al. Facioscapulohumeral muscular dystrophy. Phenotype–genotype correlation in patients with borderline D4Z4 repeat numbers. J Neurol. 2003;250(8):932–937.
  • Padberg GW. Facioscapulohumeral disease. Leiden (the Netherlands): University of Leiden; 1982.