Estudio sobre nivel de independencia y necesidad de recursos de apoyo en una población con enfermedades neuromusculares

  1. Pousada García, Thais 1
  2. Pereira Loureiro, Javier 1
  3. Groba González, Betania 1
  4. Nieto-Riveiro, Laura 1
  5. Pazos Sierra, Alejandro 1
  1. 1 Universidad de La Coruña. España
Journal:
Revista Española de Discapacidad (REDIS)

ISSN: 2340-5104

Year of publication: 2018

Issue Title: REVISTA ESPAÑOLA DE DISCAPACIDAD

Volume: 6

Issue: 2

Pages: 131-147

Type: Article

DOI: 10.5569/2340-5104.06.02.07 DIALNET GOOGLE SCHOLAR lock_openDialnet editor

More publications in: Revista Española de Discapacidad (REDIS)

Abstract

Objectives: to obtain a profile on the functional capacity and participation of people with Neuromuscular Disorders (NMD), and to determine the support resources required to improve or maintain their degree of independence. Methods: cross-sectional study with 24 persons with NMD. The Functional Independence Measure (FIM), the checklist of a home’s accessibility level and specific questionnaire were administered. Results: sample formed by fourteen women (58.3 %) and 10 men (41.7 %). A mean of 61.7 (SD = 17.2) was obtained for FIM Motor, over 91, indicating a moderate level of dependence. The assistive technology (AT) most frequently used was the wheelchair (70.8 %). The architectural barriers were detected in the majority of the users’ homes (87.5 %). Conclusions: a concise assessment of the independence needs of people with NMD and prescription of the most adequate resources to meet them is required. This procedure should be implemented in health-care programs, including care to caregiver.

Bibliographic References

  • Ahlström, G. et al. (2006): “A comprehensive rehabilitation programme tailored to the needs of adults with muscular dystrophy”. Clinical Rehabilitation, 20 (2): 132–141.
  • Ahlström, G., y Sjöden, P. O. (1996): “Coping with illness-related problems and quality of life in adult individuals with muscular dystrophy”. Journal of Psychosomatic Research, 41 (4): 365–376. https://doi.org/10.1016/S0022-3999(96)00191-2.
  • Boström, K. et al. (2005): “Sickness impact in people with muscular dystrophy: a longitudinal study over 10 years”. Clinical Rehabilitation, 19 (6): 686–694.
  • Boström, K. y Ahlström, G. (2004): “Living with a chronic deteriorating disease: the trajectory with muscular dystrophy over ten years”. Disability and Rehabilitation, 26 (23): 1388–1398.
  • Boyer, F. et al. (2006a): “Factors relating to career burden for families of persons with muscular dystrophy”. Journal of Rehabilitation Medicine, 38: 309–315.
  • Boyer, F. et al. (2006b): “Family caregivers and hereditary muscular disorders: association between burden, quality of life and mental health”. Annales de Readaptation et de Medecine Physique : Revue Scientifique de La Societe Francaise de Reeducation Fonctionnelle de Readaptation et de Medecine Physique, 49 (1): 16–22. https://doi.org/10.1016/j.annrmp.2005.08.001.
  • Carter, G. T. (2009): Rehabilitation management in neuromuscular disease (en línea). http://emedicine.medscape.com/article/321397-overview, acceso 5 de diciembre de 2018.
  • Creek, M. (2001): “Modelling control strategies for foot-and-mouth disease”. The Veterinary Record, 149 (10): 311.
  • Cup, E. H. et al. (2007a): “Exercise Therapy and Other Types of Physical Therapy for Patients With Neuromuscular Diseases: A Systematic Review”. Archives of Physical Medicine and Rehabilitation, 88 (11): 1452–1464. https://doi.org/10.1016/j.apmr.2007.07.024.
  • Cup, E. H. et al. (2007b): “Referral of patients with neuromuscular disease to occupational therapy, physical therapy and speech therapy: usual practice versus multidisciplinary advice”. Disability and Rehabilitation, 29 (9): 717–726. https://doi.org/10.1080/09638280600926702.
  • Dodds, T. A. et al. (1993): “A validation of the functional independence measurement and its performance among rehabilitation inpatients”. Archives of Physical Medicine and Rehabilitation, 74 (5): 531–536.
  • Duger, T. et al. (2003): “The environmental barriers of children with Muscular Dystrophies and its effect on mother’s low back pain”. Disability and Rehabilitation, 25 (20): 1187–1192. https://doi.org/10.1080/09638280310001599952.
  • España. Real Decreto 1971/1999, de 23 de diciembre, de procedimiento para el reconocimiento, declaración y calificación del grado de minusvalía. Boletín Oficial del Estado, 26 de enero de 2000, núm. 22, pp. 3317-3410.
  • Evans, S. et al. (2007): “Young people’s experiences using electric powered indoor - outdoor wheelchairs (EPIOCs): potential for enhancing users’ development?”. Disability and Rehabilitation, 29 (16): 1281–1294. https://doi.org/10.1080/09638280600964406.
  • Febrer, A. et al. (2001): “Estudio sobre ayudas técnicas en la distrofia muscular de duchenne”. Rehabilitación, 35 (1): 20–27 (en línea). https://doi.org/10.1016/S0048-7120(01)73131-3, acceso 7 de diciembre de 2018.
  • Fujiwara, T. et al. (2009): Activities of daily living (ADL) structure of patients with Duchenne muscular dystrophy, including adults. The Keio Journal of Medicine, 58 (4): 223–226.
  • Hoffer, M. M. et al. (1973): “Functional ambulation in patients with myelomeningocele”. The Journal of Bone and Joint surgery. American Volume, 55 (1): 137–148.
  • Instituto Nacional de Estadística (2009): “Encuesta de discapacidad, autonomía personal y situaciones de dependencia en España, 2008”. Boletín Informativo del INE, 10: 1–12.
  • Jedeloo, S. et al. (2002): “Client satisfaction with service delivery of assistive technology for outdoor mobility”. Disability and Rehabilitation, 24 (10): 550–557. https://doi.org/10.1080/09638280110108292.
  • Jutai, J. et al. (2000): “Psychosocial impact of electronic aids to daily living”. Assistive Technology : The Official Journal of RESNA, 12 (2): 123–131. https://doi.org/10.1080/10400435.2000.10132018.
  • Linacre, J. M. et al. (1994): “The structure and stability of the Functional Independence Measure”. Archives of Physical Medicine and Rehabilitation, 75 (2): 127–132.
  • Louise-Bender, P. T. et al. (2002): “The shaping of individual meanings assigned to assistive technology: a review of personal factors”. Disability and Rehabilitation, 24 (1–3): 5–20.
  • McDonald, C. (2002): “Physical activity, health impairments and disability in neuromuscular disease”. American Journal of Physical Medicine and Rehabilitation, 81: 108–120.
  • Meyers, A. R. et al. (2002): “Barriers, facilitators, and access for wheelchair users: substantive and methodologic lessons from a pilot study of environmental effects”. Social Science & Medicine (1982), 55 (8): 1435–1446.
  • Natterlund, B. y Ahlström, G. (2001): “Activities of daily living and quality of life in persons with muscular dystrophy”. Journal of Rehabilitation Medicine : Official Journal of the UEMS European Board of Physical and Rehabilitation Medicine, 33 (5): 206–211.
  • Pieterse, A. J. et al. (2008): “Development of a tool to guide referral of patients with neuromuscular disorders to allied health services. Part two”. Disability and Rehabilitation, 30 (11): 855–862. https://doi.org/10.1080/09638280701403460.
  • Pousada T. et al. (2015): “Exploring the Psychosocial Impact of Wheelchair and Contextual Factors on Quality of Life of People with Neuromuscular Disorders”. Assistive Technology, 27 (4): 246-256. https://doi.org/10.1080/10400435.2015.1045996.
  • Poveda, R. et al. (1998): Problemática de los usuarios de sillas de ruedas en España (vol. 1). Valencia: Instituto de Biomecánica de Valencia.
  • Richardson, M., y Frank, A. O. (2009): “Electric powered wheelchairs for those with muscular dystrophy: problems of posture, pain and deformity”. Disability and rehabilitation.Assistive Technology, 4 (3): 181–188. https://doi.org/10.1080/17483100802543114.
  • Rodríguez, L. P. (1997): Medida de la Independencia Funcional (MIF). Guía para la utilización del sistema de datos uniformes para medicina física y de rehabilitación. Madrid: Servicio de Documentación Científica del Grupo FAES.
  • Sharrack, B. et al. (1999): “The psychometric properties of clinical rating scales used in multiple sclerosis”. Brain : A Journal of Neurology, 122 (Pt 1): 141–159.
  • Stein, J. y Cassell, J. (2007): An introductory guide for families with a child newly diagnosed with neuromuscular dystrophy or an associated neuromuscular condition (vol. 1). London: Muscular Dystrophy Campain.
  • Stuberg, W. (2001): “Home accessibility and adaptative equipment in duchenne muscular dystrophy: a case report”. Pediatric Physical Therapy, 13 (4): 169–174.
  • Uniform Data System for Medical Rehabilitation (1997): Functional Independence Measure, version 5.1. New York: Buffalo General Hospital.
  • World Health Organization (2001): International classification of functioning, disability and health – ICF (vol. 1). Ginebra: WHO.
Data source: Dialnet