Rehabilitation for Charcot Marie tooth: A survey study of patients and familiar/caregiver perspective and perception of efficacy and needs

European Journal of Physical and Rehabilitation Medicine

Volumn 50, Issue 1, 2014, Pages 25-30

  Padua, L ^a,b   Pazzaglia, C ^a   Schenone, A ^c   Ferraro, F ^d   Biroli, A ^e   Esposito, C ^f   Pareyson, D ^g  

^a IRCCS FONDAZIONE DON CARLO GNOCCHI   (Italy)

^b CATHOLIC UNIVERSITY   (Italy)

^c UNIVERSITY OF GENOA   (Italy)

^d Azienda Ospedaliera   (Italy)

^e MOLINETTE HOSPITAL   (Italy)

^f Rehabilitation Department of Charcot Marie Tooth Rehabilitation Ospedale Spolverini di Ariccia   (Italy)

^g DEPARTMENT OF NEUROSURGERY   (Italy)

Author keywords

Charcot marie tooth disease; Cross sectional studies; Questionnaires; Rehabilitation

Indexed keywords

ADOLESCENT; ADULT; AGED; CAREGIVER; CHARCOT-MARIE-TOOTH DISEASE; CLINICAL TRIAL; CROSS-SECTIONAL STUDY; FAMILY; FEMALE; HUMAN; KINESIOTHERAPY; MALE; MIDDLE AGED; MULTICENTER STUDY; OUTPATIENT; PATHOPHYSIOLOGY; PHYSIOLOGY; PROCEDURES; QUESTIONNAIRE; WALKING; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; CAREGIVERS; CHARCOT-MARIE-TOOTH DISEASE; CROSS-SECTIONAL STUDIES; EXERCISE THERAPY; FAMILY; FEMALE; HUMANS; MALE; MIDDLE AGED; OUTPATIENTS; QUESTIONNAIRES; WALKING; YOUNG ADULT;

EID: 84901631612     PISSN: 19739087     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (22)

1. Pareyson D, Scaioli V, Laura M. Clinical and electrophysiologi-cal aspects of Charcot-Marie-Tooth disease. Neuromolecular Med 2006;8:3-22.
2. Pareyson D, Reilly MM, Schenone A, Fabrizi GM, Cavallaro T, Santoro L et al. Ascorbic acid in Charcot-Marie-Tooth disease type 1A (CMT-TRIAAL and CMT-TRAUK): A double-blind ran-domised trial. Lancet Neurol 2011;10:320-8.
3. Lindeman E, Leffers P, Spaans F, DrukkerJ, Reulen J, Kerckhoffs M et al. Strength training in patients with myotonic dystrophy and hereditary motor and sensory neuropathy: A randomized clinical trial. Arch Phys Med Rehabil 1995;76:612-20.
4. Maggi G, Monti Bragadin M, Padua L, Fiorina E, Bellone E, Grandis M et al. Outcome measures and rehabilitation treat-ment in patients affected by Charcot-Marie-Tooth neuropathy: A pilot study. Am J Phys Med Rehabil 2011;90:628-37.
5. El Mhandi L, Pichot V, Calmels P, Gautheron V, Roche F, Feas- son L. Exercise training improves autonomic profiles in patients with Charcot-Marie-Tooth disease. Muscle Nerve 2011;44:732-6.
6. El Mhandi L, Millet GY, Calmels P, Richard A, Oullion R, Gau-theron V et al."Benefits of interval-training on fatigue and func-tional capacities in Charcot-Marie-Tooth disease. Muscle Nerve 2008;37:601-10.
7. Rose KJ, Burns J, Ouvrier RA. Role of stretching in Charcot- Marie-Tooth disease. Eura Medicophys 2007;43:560-1; author reply 561-2.
8. Padua L, Shy ME, Aprile I, Cavallaro T, Pareyson D, Quattrone A et al. Correlation between clinical/neurophysiological find-ings and quality of life in Charcot-Marie-Tooth type 1A. J Pe- ripher Nerv Syst 2008;13:64-70.
9. Padua L, Pareyson D, Aprile I, Cavallaro T, Quattrone DA, Riz- zuto N et al. Natural history of Charcot-Marie-Tooth 2: 2-year follow-up of muscle strength, walking ability and quality of life. Neurol Sci 2010;31:175-8.
10. Shy ME, Rose MR. Charcot-Marie-Tooth disease impairs quality of life: why? And how do we improve it? Neurology 2005;65:790-1.
11. Vinci P. Perplexity about the use of the Charcot-Marie-Tooth Neuropathy Score in rehabilitation. Eur J Phys Rehabil Med 2008;44:473-4.
12. Padua L, Schenone A, Pazzaglia C, Pareyson D. The use of Charcot-Marie-Tooth Neuropathy Score. Eur J Phys Rehabil Med 2009;45:291-2.
13. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30:473-83.
14. Apolone G, Mosconi P. The Italian SF-36 Health Survey: Transla-tion, validation and norming. J Clin Epidemiol 1998;51:1025-36.
15. Smilkstein G. The family APGAR: A proposal for a family func-tion test and its use by physicians. J Fam Pract 1978;6:1231-9.
16. Padua L, Aprile I, Cavallaro T, Commodari I, La Torre G, Parey-son D et al. Variables influencing quality of life and disability in Charcot Marie Tooth (CMT) patients: Italian multicentre study. Neurol Sci 2006;27:417-23.
17. NHS Executive. Rehabilitation: A guide. Department of Health, HMSO; 1997.
18. Hobart JC, Freeman JA, Lamping DL. Physician and patient- oriented outcomes in progressive neurological disease: which to measure? Curr Opin Neurol 1996;9:441-4.
19. Asch DA, Jedrziewski MK, Christakis NA. Response rates to mail surveys published in medical journals. J Clin Epidemiol 1997;50:1129-36.
20. Le Fort M, Wierdewski S, Bernard I, Bernier C, Bonnemain B, Moreau C et al. Multiple sclerosis and access to healthcare in the Pays de la Loire region: preliminary study based on 130 self-applied double questionnaires. Ann Phys Rehabil Med 2011;54:156-71.
21. World Health Organisation. Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19-22 June, 1946; signed on 22 July 1946 by the representatives of 6l States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948.
22. Kole A, Faurisson F. Rare diseases social epidemiology: Analysis of inequalities. Adv Exp Med Biol 2010;686:223-50.