Hostname: page-component-78c5997874-94fs2 Total loading time: 0 Render date: 2024-11-10T07:15:10.922Z Has data issue: false hasContentIssue false
  • English
  • Français

Effectiveness of Teleassistance at Improving Quality of Life in People with Neuromuscular Diseases

Published online by Cambridge University Press:  15 December 2014

Oscar Martínez ,
Amaia Jometón ,
Manuel Pérez ,
Esther Lázaro ,
Imanol Amayra ,
Juan Francisco López-Paz ,
Mireia Oliva ,
Pamela Parada ,
Sarah Berrocoso  and
Andrea Iglesias
...Show all authors
Oscar Martínez*
Affiliation:
Universidad de Deusto (Spain)
Amaia Jometón
Affiliation:
Universidad de Deusto (Spain)
Manuel Pérez
Affiliation:
Universidad de Deusto (Spain)
Esther Lázaro
Affiliation:
Universidad de Deusto (Spain)
Imanol Amayra
Affiliation:
Universidad de Deusto (Spain)
Juan Francisco López-Paz
Affiliation:
Universidad de Deusto (Spain)
Mireia Oliva
Affiliation:
Universidad de Deusto (Spain)
Pamela Parada
Affiliation:
Universidad de Deusto (Spain)
Sarah Berrocoso
Affiliation:
Universidad de Deusto (Spain)
Andrea Iglesias
Affiliation:
Universidad de Deusto (Spain)
Patricia Caballero
Affiliation:
Universidad de Deusto (Spain)
Luis De Nicolás y Martínez
Affiliation:
Universidad de Deusto (Spain)
José Eulalio Bárcena
Affiliation:
Hospital de Cruces (Spain)
*
*Correspondence concerning this article should be addressed to Oscar Martínez. Faculty of Psychology and Education. Universidad de Deusto. Avenida de las Universidades. 24. 48007. Bilbao (Spain). E-mail: oscar.martinez@deusto.es
Get access Rights & Permissions [Opens in a new window]

Abstract

Rare neuromuscular diseases (NDs) are a group of inherited or acquired neurological pathologies affecting the muscles and the nervous system. Their low prevalence and high geographical dispersion can cause isolation and difficulties in social interaction between affected equals. New technologies, such as videoconferencing, offer a complementary option for improving the health of this population. The purpose of this study was to assess the effectiveness of a teleassistance program at improving health-related quality of life (HRQoL) through social interaction in adults with NDs. The sample consisted of 45 participants affected by rare NDs. Twenty-four participants were assigned to the experimental group (EG), which participated in the videoconferencing sessions, and 21 to the control group. Three questionnaires were administered: WHO-DAS II, Sickness Impact Profile, and SF-36 Health Survey. Effectiveness was assessed by a pre-post design. An online psychosocial program was applied over three-month period. Data revealed an improvement of the EG in psychosocial variables, e.g. “Getting along with people” (z = –2.289, r = –.47, p ≤ .05) or “Psychosocial Domain” (z = –2.404, r = –.49, p ≤ .05), and in physical variables, e.g. “Life activities” (z = –2.844, r = –.58, p ≤ .05). Social interaction appeared as a relevant factor at improving HRQoL levels. High levels of satisfaction about the teleassistance program were reported.

Keywords

teleassistancevideoconferencingneuromuscular diseasequality of lifesocial interaction
Type
Research Article
Information
The Spanish Journal of Psychology , Volume 17 , 2014 , E86
Copyright
Copyright © Universidad Complutense de Madrid and Colegio Oficial de Psicólogos de Madrid 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alonso, J., Prieto, L., & Antó, J. M. (1995). La versión española del SF-36 Health Survey (Cuestionario de Salud SF-36): Un instrumento para la medida de los resultados clínicos [The Spanish versión of the SF-36 Health Survey: An instrument for measuring clinical outcomes]. Medicina Clínica, 104, 771–776.Google Scholar
Amayra Caro, I., Lázaro Pérez, E., López Paz, J. F., & De la Cruz Beldarrain, A. (2008). On-line psychological support for parents of children and teenagers with neuromuscular diseases. Neuromuscular Disorders, 18, 821. http://dx.doi.org/10.1016/j.nmd.2008.06.335 CrossRefGoogle Scholar
ASEM (2008). Guía de las enfermedades neuromusculares. Información y apoyo a las familias [Neuromuscular diseases guide. Information and support for families]. Jaén, Spain: Formación Alcalá.Google Scholar
ASEM/AFM (2004). Enfermedades neuromusculares, 49 fichas [Neuromuscular diseases, 49 files]. Barcelona, Spain: ASEM. Asociación Española contra las Enfermedades Neuromusculares.Google Scholar
Ayuso-Mateos, J. L., Lasa, L., Vázquez-Barquero, J. L., Oviedo, A., & Díez-Manrique, J. F. (1999). Measuring health status in psychiatric community surveys: Internal and external validity of the Spanish version of the SF-36. Acta Psychiatrica Scandinavica, 99, 26–32. http://dx.doi.org/10.1111/j.1600-0447.1999.tb05381.x Google Scholar
Backhaus, A., Agha, Z., Maglione, M. L., Repp, A., Ross, B., Zuest, D., …Thorp, S. R. (2012). Videoconferencing psychotherapy: A systematic review. Psychological Services, 9, 111–131. http://dx.doi.org/10.1037/a0027924 Google Scholar
Badía, X., & Alonso, J. (1994). Adaptación de una medida de la disfunción relacionada con la enfermedad: La versión española del Sickness Impact Profile [Adapting a measure of dysfunction related to the disease: The Spanish version of the Sickness Impact Profile]. Medicina Clínica, 102, 90–95.Google Scholar
Bergner, M., Bobbitt, R. A., Pollard, W. E., Martin, D. P., & Gilson, B. S. (1976). The Sickness Impact Profile: Validation of a health status measure. Medical Care, 14, 57–67. http://dx.doi.org/10.1097/00005650-197601000-00006 Google Scholar
Boeschoten, R. E., Nieuwenhuis, M. M., van Oppen, P., Uitdehaag, B. M. J., Polman, C. H., Collette, E. H., … Dekker, J. (2012). Feasibility and outcome of a web-based self-help intervention for depressive symptoms in patients with multiple sclerosis: A pilot study. Journal of the Neurological Sciences, 315, 104–109. http://dx.doi.org/10.1016/j.jns.2011.11.016 Google Scholar
Chumbler, N. R., Rose, D. K., Griffiths, P., Quigley, P., McGee-Hernandez, N., Carlson, K. A., … Hoenig, H. (2010). Study protocol: Home-based telehealth stroke care: A randomized trial for veterans. Trials, 11, 74. http://dx.doi.org/10.1186/1745-6215-11-74 Google Scholar
Cosio, D., Jin, L., Siddique, J., & Mohr, D. C. (2011). The effect of telephone-administered cognitive-behavioral therapy on quality of life among patients with multiple sclerosis. Annals of Behavioral Medicine, 41, 227–234. http://dx.doi.org/10.1007/s12160-010-9236-y Google Scholar
Doorenbos, A. Z., Eaton, L. H., Haozous, E., Towle, C., Revels, L., & Buchwald, D. (2010). Satisfaction with telehealth for cancer support groups in rural American Indian and Alaska native communities. Clinical Journal of Oncology Nursing, 14, 765–770. http://dx.doi.org/10.1188/10.CJON.765-770 Google Scholar
Emery, A. (1991). Population frequencies of inherited neuromuscular diseases - A world survey. Neuromuscular Disorders, 1, 19–29. http://dx.doi.org/10.1016/0960-8966(91)90039-U Google Scholar
Ferrer-Roca, O., García-Nogales, A., & Peláez, C. (2010). The impact of telemedicine on quality of life in rural areas: The Extremadura model of specialized care delivery. Telemedicine and e-Health, 16, 233–243. http://dx.doi.org/10.1089/tmj.2009.0107 Google Scholar
Fioravanti, G., Casale, S., Mantegazza, R., Leonardi, M., & Raggi, A. (2010). Self-efficacy, social support and locus of control as correlates of health-related quality of life in myasthenia gravis. Bollettino di Psicología Applicata, 261, 19–27.Google Scholar
Graham, C. D., Rose, M. R., Grunfeld, E. A., Kyle, S. D., & Weinman, J. (2011). A systematic review of quality of life in adults with muscle disease. Journal of Neurology, 258, 1581–1592. http://dx.doi.org/10.1007/s00415-011-6062-5 Google Scholar
Gustke, S. S., Balch, D. C., West, V. L., & Rogers, L. O. (2000). Patient satisfaction with telemedicine. Telemedicine Journal, 6, 5–13. http://dx.doi.org/10.1089/107830200311806 CrossRefGoogle Scholar
Hart, S., Fonareva, I., Merluzzi, N., & Mohr, D. C. (2005). Treatment for depression and its relationship to improvement in quality of life and psychological well-being in multiple sclerosis patients. Quality of Life Research, 14, 695–703. http://dx.doi.org/10.1007/s11136-004-1364-z Google Scholar
Hubbard, P. A., Broome, M. E., & Antia, L. A. (2005). Pain, coping, and disability in adolescents and young adults with cystic fibrosis: A Web-based study. Pediatric Nursing, 31, 82–86.Google Scholar
Kierkegaard, M., Harms-Ringdahl, K., Holmqvist, L. W., & Tollbäck, A. (2011). Functioning and disability in adults with myotonic dystrophy type 1. Disability and Rehabilitation, 33, 1826–1836. http://dx.doi.org/10.3109/09638288.2010.549287 CrossRefGoogle ScholarPubMed
Kroenke, K., Theobald, D., Wu, J., Norton, K., Morrison, G., Carpenter, J., & Tu, W. (2010). Effect of telecare management on pain and depression in patients with cancer: A randomized trial. JAMA: Journal of the American Medical Association, 304, 163–171. http://dx.doi.org/10.1001/jama.2010.944 Google Scholar
Lázaro Pérez, E., Amayra Caro, I., López Paz, J. F., De la Cruz Beldarrain, A., & Alday, E. (2009). Psychosocial online program directed to parents of children and teenagers with neuromuscular disease. Journal of Health Technology and Application, 7, 78–81.Google Scholar
Leonardi, M., Raggi, A., Antozzi, C., Confalonieri, P., Maggi, L., Cornelio, F., & Mantegazza, R. (2009). Identification of international classification of functioning, disability and health relevant categories to describe functioning and disability of patients with myasthenia gravis. Disability and Rehabilitation, 31, 2041–2046. http://dx.doi.org/10.1080/09638280902893634 Google Scholar
Leonardi, M., Raggi, A., Antozzi, C., Confalonieri, P., Maggi, L., Cornelio, F., & Mantegazza, R. (2010). The relationship between health, disability and quality of life in myasthenia gravis: Results from an Italian study. Journal of Neurology, 257, 98–102. http://dx.doi.org/10.1007/s00415-009-5279-z CrossRefGoogle ScholarPubMed
López Paz, J. F., Amayra Caro, I., Lázaro Pérez, E., De la Cruz Beldarrain, A., & Alday, E. (2009). Effectiveness of a psycho-educational online program directed to children and teenagers with neuromuscular disease. Journal of eHealth Technology and Application, 7, 72–77.Google Scholar
Macea, D. D., Gajos, K., Daglia Calil, Y. A., & Fregni, F. (2010). The efficacy of Web-based cognitive behavioral interventions for chronic pain: A systematic review and meta-analysis. The Journal of Pain, 11, 917–929. http://dx.doi.org/10.1016/j.jpain.2010.06.005 Google Scholar
Mair, F., & Whitten, P. (2000). Systematic review of studies of patient satisfaction with telemedicine. BJM, 320, 1517–1520. http://dx.doi.org/10.1136/bmj.320.7248.1517 Google Scholar
Polisena, J., Tran, K., Cimon, K., Hutton, B., McGill, S., & Palmer, K. (2009). Home telehealth for diabetes management: A systematic review and meta-analysis. Diabetes, Obesity & Metabolism, 11, 913–930. http://dx.doi.org/10.1111/j.1463-1326.2009.01057.x Google Scholar
Polisena, J., Tran, K., Cimon, K., Hutton, B., McGill, S., Palmer, K., & Scott, R. E. (2010). Home telehealth for chronic obstructive pulmonary disease: A systematic review and meta-analysis. Journal of Telemedicine & Telecare, 16, 120–127. http://dx.doi.org/10.1258/jtt.2009.090812 Google Scholar
Rabinowitz, T., Murphy, K. M., Amour, J. L., Ricci, M. A., Caputo, M. P., & Newhouse, P. A. (2010). Benefits of a telepsychiatry consultation service for rural nursing home residents. Telemedicine and e-Health, 16, 34–40. http://dx.doi.org/10.1089/tmj.2009.0088 Google Scholar
Rotondi, A. J., Sinkule, J., & Spring, M. (2005). An interactive web-based intervention for persons with TBI and their families: Use and evaluation by female significant others. Journal of Head Trauma Rehabilitation, 20, 173–185. http://dx.doi.org/10.1097/00001199-200503000-00005 Google Scholar
Schwartz, C., & Frohner, R. (2005). Contribution of demographic, medical, and social support variables in predicting the mental health dimension of quality of life among people with multiple sclerosis. Health & Social Work, 30, 203–212. http://dx.doi.org/10.1093/hsw/30.3.203 CrossRefGoogle ScholarPubMed
Shepherd, L., Goldstein, D., Whitford, H., Thewes, B., Brummell, V., & Hicks, M. (2006). The utility of videoconferencing to provide innovative delivery of psychological treatment for rural cancer patients: Results of a pilot study. Journal of Pain and Symptom Management, 32, 453–461. http://dx.doi.org/10.1016/j.jpainsymman.2006.05.018 Google Scholar
Sloan, D. M., Gallagher, M. W., Feinstein, B. A., Lee, D. J., & Pruneau, G. M. (2011). Efficacy of telehealth treatments for posttraumatic stress-related symptoms: A meta-analysis. Cognitive Behaviour Therapy, 40, 111–125. http://dx.doi.org/10.1080/16506073.2010.550058 Google Scholar
Soutter, J., Hamilton, N., Russell, P., Russell, C., Bushby, K., Sloper, P., & Bartlett, K. (2004). The Golden Freeway: A preliminary evaluation of a pilot study advancing information technology as a social intervention for boys with Duchenne muscular dystrophy and their families. Health and Social Care in the Community, 12, 25–33. http://dx.doi.org/10.1111/j.1365-2524.2004.00465.x Google Scholar
Twork, S., Wiesmeth, S., Klewer, J., Pöhlau, D., & Kugler, J. (2010). Quality of life and life circumstances in German myasthenia gravis patients. Health and Quality of Life Outcomes, 8, 129. http://dx.doi.org/10.1186/1477-7525-8-129 CrossRefGoogle ScholarPubMed
Vázquez-Barquero, J. L., Arias, M. A., Peña, C., Díez, J. F., Ayesterán, A., & Miró, J. (1991). El cuestionario “perfil de impacto de la enfermedad” (SIP): Versión española de una medida del estado de salud [The Sickness Impact Profile questionnaire (SIP): Spanish versión of a health status measure]. Actas Luso-Españolas de Neurología, Psiquiatría y Ciencias Afines, 19, 127–134.Google Scholar
Vázquez-Barquero, J. L., Herrera, S., Vázquez, E., & Gaite, L. (2006). Cuestionario para la evaluación de discapacidad de la Organización Mundial de la Salud WHO-DAS II [World Health Organization disability assessment schedule WHO-DAS II]. Madrid, Spain: Subdirección General de Información Administrativa y Publicaciones.Google Scholar
Vitacca, M., Bianchi, L., Guerra, A., Fracchia, C., Spanevello, A., Balbi, B., & Scalvini, S. (2009). Tele-assistance in chronic respiratory failure patients: A randomized clinical trial. European Respiratory Journal, 33, 411–418. http://dx.doi.org/10.1183/09031936.00005608 Google Scholar
Vitacca, M., Comini, L., Tentorio, M., Assoni, G., Trainini, D., Fiorenza, D., … Scalvini, S. (2010). A pilot trial of telemedicine-assisted, integrated care for patients with advanced amyotrophic lateral sclerosis and their caregivers. Journal of Telemedicine and Telecare, 16, 83–88. http://dx.doi.org/10.1258/jtt.2009.090604 Google Scholar
Ware, J. E., & Sherbourne, C. D. (1992). The MOS 36-item short-form health-survey (SF-36): I. Conceptual framework and item selection. Medical Care, 30, 473–483. http://dx.doi.org/10.1097/00005650-199206000-00002 Google Scholar
Watson, A., Bickmore, T., Cange, A., Kulshreshtha, A., & Kvedar, J. (2012). An Internet-based virtual coach to promote physical activity adherence in overweight adults: Randomized controlled trial. Journal of Medical Internet Research, 14, 44–55. http://dx.doi.org/10.2196/jmir.1629 Google Scholar
Wilson, S., Washington, L. A., Engel, J. M., Ciol, M. A., & Jensen, M. P. (2006). Perceived social support, psychological adjustment, and functional ability in youths with physical disabilities. Rehabilitation Psychology, 51, 322–330. http://dx.doi.org/10.1037/0090-5550.51.4.322 Google Scholar
Winter, Y., Schepelmann, K., Spottke, A. E., Claus, D., Grothe, C., Schröder, R., & Dodel, R. (2010). Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy. Journal of Neurology, 257, 1473–1481. http://dx.doi.org/10.1007/s00415-010-5549-9 Google Scholar
World Health Organization (2001). World Health Organization Disability Assessment Schedule II (WHODAS II). Geneva, Switzerland: World Health Organization.Google Scholar