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A critical review of patient and parent caregiver oriented tools to assess health-related quality of life, activity of daily living and caregiver burden in spinal muscular atrophy.
Messina, Sonia; Frongia, Anna Lia; Antonaci, Laura; Pera, Maria Carmela; Coratti, Giorgia; Pane, Marika; Pasternak, Amy; Civitello, Matthew; Montes, Jacqueline; Mayhew, Anna; Finkel, Richard; Muntoni, Francesco; Mercuri, Eugenio.
Afiliación
  • Messina S; Department of Clinical and Experimental Medicine, University of Messina and Centro Clinico Nemo, Messina, Italy.
  • Frongia AL; Pediatric Neurology Unit, Catholic University, Largo Gemelli 8, 00168 Rome, Italy; Centro Clinico Nemo, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy.
  • Antonaci L; Pediatric Neurology Unit, Catholic University, Largo Gemelli 8, 00168 Rome, Italy; Centro Clinico Nemo, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy.
  • Pera MC; Pediatric Neurology Unit, Catholic University, Largo Gemelli 8, 00168 Rome, Italy; Centro Clinico Nemo, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy.
  • Coratti G; Pediatric Neurology Unit, Catholic University, Largo Gemelli 8, 00168 Rome, Italy; Centro Clinico Nemo, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy.
  • Pane M; Centro Clinico Nemo, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy.
  • Pasternak A; Department of Neurology and Department of Physical and Occupational Therapy, Boston Children's Hospital, Harvard Medical School, Boston, MA, United States.
  • Civitello M; Nemours Children's Hospital, University of Central Florida College of Medicine, Orlando, United States.
  • Montes J; Departments of Rehabilitation and Regenerative Medicine and Neurology, Columbia University Irving Medical Center, New York, United States.
  • Mayhew A; Institute of Genetic Medicine, Newcastle University, United Kingdom.
  • Finkel R; Nemours Children's Hospital, University of Central Florida College of Medicine, Orlando, United States.
  • Muntoni F; Dubowitz Neuromuscular Centre, UCL Great Ormond Street Institute of Child Health, London, United Kingdom; NIHR Great Ormond Street Hospital Biomedical Research Centre, UCL Great Ormond Street Institute of Child Health, Great Ormond Street Hospital Trust, London, United Kingdom.
  • Mercuri E; Pediatric Neurology Unit, Catholic University, Largo Gemelli 8, 00168 Rome, Italy; Centro Clinico Nemo, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy. Electronic address: eugeniomaria.mercuri@unicatt.it.
Neuromuscul Disord ; 29(12): 940-950, 2019 12.
Article en En | MEDLINE | ID: mdl-31791871
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Actividades Cotidianas / Atrofia Muscular Espinal / Cuidadores / Costo de Enfermedad Tipo de estudio: Prognostic_studies Aspecto: Patient_preference Límite: Humans Idioma: En Revista: Neuromuscul Disord Asunto de la revista: NEUROLOGIA Año: 2019 Tipo del documento: Article País de afiliación: Italia
Texto completo
Añadir a Mi BVS
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XML
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Actividades Cotidianas / Atrofia Muscular Espinal / Cuidadores / Costo de Enfermedad Tipo de estudio: Prognostic_studies Aspecto: Patient_preference Límite: Humans Idioma: En Revista: Neuromuscul Disord Asunto de la revista: NEUROLOGIA Año: 2019 Tipo del documento: Article País de afiliación: Italia