Calidad de vida relacionada con la salud en pacientes con ataxias espinocerebelosas
Tài liệu tham khảo
Berciano, 2002, Ataxias y paraplejias hereditarias: una revisión clinicogenética, Neurología., 17, 40
Alonso, 2013, Epidemiology of hereditary ataxias in Spain: Hospital discharge registry and population-based mortality study, Neuroepidemiology., 41, 13, 10.1159/000346275
Polo, 1993, Epidemiologia de las ataxias y parapaplejías hereditarias, 27
Polo, 1991, Hereditary ataxias and paraplejías in Cantabria, Spain. An epidemiological and clinical study, Brain., 114, 855, 10.1093/brain/114.2.855
National Ataxia Foundation. [Consultado 1 Jun 2015]. Disponible en: http://www.ataxia.org
Federación de Ataxias de España (FEDAES). [Consultado 01 Jun 2015]. Disponible en: http://www.fedaes.org
National Institute of Neurological Disorders and Stroke (NINDS). Ataxia de Friederich. [Consultado 1 Jun 2015]. Disponible en: http://www.ninds.nih.gov/disorders/disorder_index.htm
Schmitz-Hübsch, 2008, Spinocerebellar ataxia types 1, 2, 3, and 6: Disease severity and nonataxia symptoms, Neurology., 71, 982, 10.1212/01.wnl.0000325057.33666.72
López-Bastida, 2008, Social economic costs and health-related quality of life in patients with degenerative cerebellar ataxia in Spain, Mov Disord., 23, 212, 10.1002/mds.21798
Devinsky, 1995, Outcome research in neurology: Incorporating health-related quality of life, Ann Neurol., 37, 141, 10.1002/ana.410370202
Linertová, 2012, Delphi approach to select rare diseases for a European representative survey. The BURQOL-RD study, Health Policy., 108, 19, 10.1016/j.healthpol.2012.08.001
Ware, 1992, The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection, Med Care., 30, 473, 10.1097/00005650-199206000-00002
Sánchez-López, 2014, Health-related quality of life in patients with amyotrophic lateral sclerosis, Neurologia., 29, 27, 10.1016/j.nrl.2013.02.008
López-Bastida, 2009, Social economic costs and health-related quality of life in patients with amyotrophic lateral sclerosis in Spain, Amyotroph Lateral Scler., 10, 237, 10.1080/17482960802430781
Alonso, 1995, Health Survey (Cuestionario de salud SF-36): un instrumento para la medida de los resultados clínicos, Med Clin (Barc)., 104, 771
Alonso, 1998, Population reference values of the Spanish version of the Health Questionnaire SF-36, Med Clin (Barc)., 111, 410
Vilagut, 2005, El Cuestionario de Salud SF-36 español: una década de experiencia y nuevos desarrollos, Gac Sanit., 19, 135, 10.1157/13074369
López-García, 2003, Valores de referencia de la versión española del Cuestionario de Salud SF-36 en población adulta de más de 60 años, Med Clin (Barc)., 120, 568, 10.1016/S0025-7753(03)73775-0
Vilagut, 2008, Interpretación de los cuestionarios de los cuestionarios SF-36 y SF-12 en España: componentes físico y mental, Med Clin (Barc)., 130, 726, 10.1157/13121076
Abele, 2007, Health-related quality of life in sporadic adult-onset ataxia, Mov Disord., 22, 348, 10.1002/mds.21265
Schmitz-Hübsch, 2010, Self-rated health status in spinocerebellar ataxia —results from a European multicenter study, Mov Disord., 25, 587, 10.1002/mds.22740
Schmitz-Hübsch, 2011, Depression comorbidity in spinocerebellar ataxia, Mov Disord., 26, 870, 10.1002/mds.23698
Calvert, 2013, Health-related quality of life and supportive care in patients with rare long-term neurological conditions, Qual Life Res., 22, 1231, 10.1007/s11136-012-0269-5
Alonso, 2004, IQOLA Project Group. Health-related quality of life associated with chronic conditions in eight countries: Results from the International Quality of Life Assessment (IQOLA) Project, Qual Life Res., 13, 283, 10.1023/B:QURE.0000018472.46236.05
Riazi, 2006, Coordinating outcomes measurement in ataxia research: Do some widely used generic rating scales tick the boxes?, Mov Disord., 21, 1396, 10.1002/mds.20985
Epstein, 2008, Health related quality of life measures in Friedreich ataxia, J Neurol Sci., 272, 123, 10.1016/j.jns.2008.05.009
Szende A, Williams A, editores. Measuring self-reported population health: An international perspective based on EQ-5D. Euro-Qol Group. Hungary: SpringMed Publishing, Ltd.; 2004.
Reetz, 2015, Biological and clinical characteristics of the European Friedreich's Ataxia Consortium for Translational Studies (EFACTS) cohort: A cross-sectional analysis of baseline data, Lancet Neurol., S1474-4422, 70321
Serrano-Aguilar, 2009, Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias, Soc Sci Med., 69, 920, 10.1016/j.socscimed.2009.07.005