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Long-term prognosis communication preferences in early-stage relapsing-remitting multiple sclerosis.
Castillo-Triviño, Tamara; Gómez-Ballesteros, Rocío; Borges, Mónica; Martín-Martínez, Jesús; Sotoca, Javier; Alonso, Ana; Caminero, Ana B; Borrega, Laura; Sánchez-Menoyo, José L; Barrero-Hernández, Francisco J; Calles, Carmen; Brieva, Luis; Blasco-Quílez, María R; García-Soto, Julio Dotor; Del Campo-Amigo, María; Navarro-Cantó, Laura; Agüera, Eduardo; Garcés-Redondo, Moisés; Carmona, Olga; Gabaldón-Torres, Laura; Forero, Lucía; Hervás, Mariona; Mauriño, Jorge; Sainz de la Maza, Susana.
Afiliación
  • Castillo-Triviño T; Department of Neurology, Hospital Universitario Donostia, San Sebastián, Spain.
  • Gómez-Ballesteros R; Medical Department, Roche Farma, Madrid, Spain. Electronic address: rocio.gomez@roche.com.
  • Borges M; Department of Neurology, Hospital Universitario Virgen Macarena, Sevilla, Spain.
  • Martín-Martínez J; Department of Neurology, Hospital Universitario Miguel Servet, Zaragoza, Spain.
  • Sotoca J; Department of Neurology, Hospital Universitari Mútua Terrassa, Terrassa, Spain.
  • Alonso A; Department of Neurology, Hospital Regional Universitario de Málaga, Málaga, Spain.
  • Caminero AB; Department of Neurology, Complejo Asistencial de Ávila, Ávila, Spain.
  • Borrega L; Department of Neurology, Hospital Universitario Fundación Alcorcón, Alcorcón, Spain.
  • Sánchez-Menoyo JL; Department of Neurology, Hospital de Galdakao-Usansolo, Galdakao, Spain.
  • Barrero-Hernández FJ; Department of Neurology, Hospital Universitario Clínico San Cecilio, Granada, Spain.
  • Calles C; Department of Neurology, Hospital Universitari Son Espases, Palma de Mallorca, Spain.
  • Brieva L; Department of Neurology, Hospital Universitari Arnau de Vilanova, Lleida, Spain.
  • Blasco-Quílez MR; Department of Neurology, Hospital Universitario Puerta de Hierro, Madrid, Spain.
  • García-Soto JD; Department of Neurology, Hospital Universitario Virgen Macarena, Sevilla, Spain.
  • Del Campo-Amigo M; Department of Neurology, Complexo Hospitalario Universitario de Pontevedra, Pontevedra, Spain.
  • Navarro-Cantó L; Department of Neurology, Hospital General Universitario de Elche, Elche, Spain.
  • Agüera E; Department of Neurology, Hospital Universitario Reina Sofía, Córdoba, Spain.
  • Garcés-Redondo M; Department of Neurology, Hospital Clínico Universitario Lozano Blesa, Zaragoza, Spain.
  • Carmona O; Department of Neurology, Fundació Salut Empordà, Figueres, Spain.
  • Gabaldón-Torres L; Department of Neurology, Hospital Francesc de Borja, Gandía, Spain.
  • Forero L; Department of Neurology, Hospital Universitario Puerta del Mar, Cádiz, Spain.
  • Hervás M; Department of Neurology, Consorci Corporació Sanitària Parc Taulí, Sabadell, Spain.
  • Mauriño J; Medical Department, Roche Farma, Madrid, Spain.
  • Sainz de la Maza S; Department of Neurology, Hospital Universitario Ramón y Cajal, Madrid, Spain.
Mult Scler Relat Disord ; 64: 103969, 2022 Aug.
Article en En | MEDLINE | ID: mdl-35728432
BACKGROUND: Multiple sclerosis is one of the most common causes of neurological disability in young adults with major consequences for their future lives. Improving communication strategies on prognosis may help patients deal with the disease and adjust their long-term life goals. However, there is limited information on patients' preferences of long-term prognosis (LTP) communication and associated factors. OBJECTIVE: The aim of this study was to describe patients' preferences and assess the factors associated with LTP communication preferences in early-stage relapsing-remitting multiple sclerosis (RRMS) patients. METHODS: A multicenter, non-interventional study was conducted. Adult patients with a diagnosis of RRMS, a disease duration from first attack ≤ 3 years, and an Expanded Disability Status Scale (EDSS) score of 0-5.5 were included. The Prognosis in MS questionnaire was used to assess how much patients want to know about their LTP. Different patient-reported measures were administered to gather information on symptom severity, pain, fatigue, mood/anxiety, quality of life, stigma, illness perception, feeling of hopelessness, self-efficacy, information avoidance and coping strategies. Cognition was assessed using the Symbol Digit Modalities Test (SDMT). A multivariate logistic regression analysis was performed to assess the association between LTP information preference and demographic and clinical characteristics, as well as patients' perspectives. RESULTS: A total of 189 patients were included (mean age: 36.1  ±  9.4 years, 71.4% female, mean disease duration: 1.2  ±  0.8 years). Median EDSS score was 1.0 (IQR = 0.0-2.0). A proportion of 68.5% (n  =  126) of patients had never discussed LTP with their neurologists, whereas 69.2% (n = 126) reported interest in knowing it (73.5% at diagnosis). Bivariate analyses suggested that patients were significantly more likely to have higher LTP information preferences if they were male and had a lower SDMT score. Male gender and a lower SDMT score were predictors of LTP information preferences. CONCLUSIONS: Patients with early-stage RRMS want to discuss their LTP shortly after diagnosis. Understanding the factors involved may be useful to design individualized communication strategies.
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Texto completo: 1 Bases de datos: MEDLINE Asunto principal: Esclerosis Múltiple Recurrente-Remitente / Esclerosis Múltiple Tipo de estudio: Clinical_trials / Diagnostic_studies / Prognostic_studies Límite: Adult / Female / Humans / Male / Middle aged Idioma: En Revista: Mult Scler Relat Disord Año: 2022 Tipo del documento: Article País de afiliación: España

Texto completo: 1 Bases de datos: MEDLINE Asunto principal: Esclerosis Múltiple Recurrente-Remitente / Esclerosis Múltiple Tipo de estudio: Clinical_trials / Diagnostic_studies / Prognostic_studies Límite: Adult / Female / Humans / Male / Middle aged Idioma: En Revista: Mult Scler Relat Disord Año: 2022 Tipo del documento: Article País de afiliación: España