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Patient-Reported Symptom Burden of Charcot-Marie-Tooth Disease Type 1A: Findings From an Observational Digital Lifestyle Study.
Thomas, Florian P; Saporta, Mario A; Attarian, Shahram; Sevilla, Teresa; Sivera, Rafael; Fabrizi, Gian M; Genovese, Filippo; Gray, Amy J; Bull, Simon; Tanesse, Daniel; Rego, Manuel; Moore, Allison; Hollett, Courtney; Paoli, Xavier; Sénéchal, Thomas; Day, Laura; Ouyang, Chengyu; Llewellyn, Samuel; Larkin, Mark; Boutalbi, Youcef.
Afiliación
  • Thomas FP; Hackensack Meridian School of Medicine, Hackensack University Medical Center, Hackensack, NJ.
  • Saporta MA; University of Miami Miller School of Medicine, Miami, FL.
  • Attarian S; Hospital University la Timone, Filnemus ERN-NMD, Marseille, France.
  • Sevilla T; Hospital Universitari i Politècnic La Fe, Universitate de Valencia, CIBERER, Valencia, Spain.
  • Sivera R; Hospital Universitari i Politècnic La Fe, CIBERER, Valencia, Spain.
  • Fabrizi GM; Department of Neurosciences, Biomedicine & Movement Sciences, University of Verona, Verona, Italy.
  • Genovese F; ACMT-Rete per la malattia di Charcot-Marie-Tooth OdV, Bologna, Italy.
  • Gray AJ; Charcot-Marie-Tooth Association, Glenolden, PA.
  • Bull S; Charcot-Marie-Tooth UK, Christchurch, United Kingdom.
  • Tanesse D; CMT France, Saint-Alban, France.
  • Rego M; Federación Española de Enfermedades Neuromusculares, Barcelona, Spain.
  • Moore A; Hereditary Neuropathy Foundation, New York, NY.
  • Hollett C; Hereditary Neuropathy Foundation, New York, NY.
  • Paoli X; Pharnext, Paris, France ; and.
  • Sénéchal T; Pharnext, Paris, France ; and.
  • Day L; Vitaccess, Oxford, United Kingdom .
  • Ouyang C; Vitaccess, Oxford, United Kingdom .
  • Llewellyn S; Vitaccess, Oxford, United Kingdom .
  • Larkin M; Vitaccess, Oxford, United Kingdom .
  • Boutalbi Y; Hackensack Meridian School of Medicine, Hackensack University Medical Center, Hackensack, NJ.
J Clin Neuromuscul Dis ; 24(1): 7-17, 2022 Sep 01.
Article en En | MEDLINE | ID: mdl-36005469
OBJECTIVES: This study aims to explore the impact of Charcot-Marie-Tooth disease type 1A (CMT1A) and its treatment on patients in European (France, Germany, Italy, Spain, and the United Kingdom) and US real-world practice. METHODS: Adults with CMT1A (n = 937) were recruited to an ongoing observational study exploring the impact of CMT. Data were collected via CMT&Me, an app through which participants completed patient-reported outcome measures. RESULTS: Symptoms ranked with highest importance were weakness in the extremities, difficulty in walking, and fatigue. Almost half of participants experienced a worsening of symptom severity since diagnosis. Anxiety and depression were each reported by over one-third of participants. Use of rehabilitative interventions, medications, and orthotics/walking aids was high. CONCLUSIONS: Patient-reported burden of CMT1A is high, influenced by difficulties in using limbs, fatigue, pain, and impaired quality of life. Burden severity appears to differ across the population, possibly driven by differences in rehabilitative and prescription-based interventions, and country-specific health care variability.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Enfermedad de Charcot-Marie-Tooth Tipo de estudio: Diagnostic_studies / Etiology_studies / Observational_studies Aspecto: Patient_preference Límite: Adult / Humans Idioma: En Revista: J Clin Neuromuscul Dis Asunto de la revista: FISIOLOGIA / NEUROLOGIA Año: 2022 Tipo del documento: Article Pais de publicación: Estados Unidos
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Enfermedad de Charcot-Marie-Tooth Tipo de estudio: Diagnostic_studies / Etiology_studies / Observational_studies Aspecto: Patient_preference Límite: Adult / Humans Idioma: En Revista: J Clin Neuromuscul Dis Asunto de la revista: FISIOLOGIA / NEUROLOGIA Año: 2022 Tipo del documento: Article Pais de publicación: Estados Unidos