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Adaptation and validation of a Spanish version of the treatment burden questionnaire in patients with multiple sclerosis.
Ysrraelit, María Célica; Fiol, Marcela Paula; Peña, Fernando Vazquez; Vanotti, Sandra; Terrasa, Sergio Adrián; Tran, Viet-Thi; Montori, Victor M; Correale, Jorge.
Afiliação
  • Ysrraelit MC; Department of Neurology, FLENI, Buenos Aires, Argentina. mcysrraelit@fleni.org.ar.
  • Fiol MP; Department of Neurology, FLENI, Buenos Aires, Argentina.
  • Peña FV; Hospital Italiano de Buenos Aires (HIBA), Buenos Aires, Argentina.
  • Vanotti S; Multiple Sclerosis Clinic, INEBA - Neurosciences Institute of Buenos Aires, Buenos Aires, Argentina.
  • Terrasa SA; Hospital Italiano de Buenos Aires (HIBA), Buenos Aires, Argentina.
  • Tran VT; Centre of Research in Epidemiology and Statistics (CRESS - UMR 1153), Paris, France.
  • Montori VM; Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, 55905, USA.
  • Correale J; Department of Neurology, FLENI, Buenos Aires, Argentina.
BMC Neurol ; 19(1): 209, 2019 Aug 27.
Article em En | MEDLINE | ID: mdl-31455235
BACKGROUND: The Treatment Burden Questionnaire (TBQ) is a self-reported measure of the effect of treatment workload on patient wellbeing. We sought to validate the TBQ in Spanish and use it to estimate the burden of treatment in Argentinian patients with multiple sclerosis (MS). METHODS: The TBQ was forward-backward translated into Spanish. Two focus groups and 25 semi-structured interviews focused on wording and possible item exclusion. Validation was performed in 2 steps. First, 162 patients across a range of MS severity completed the questionnaire. Confirmatory factor analysis assessed the dimensional structure of the TBQ. Construct validity was assessed by studying correlations with fatigue and quality of life (QoL). Then, in a second cohort of 171 patients, we evaluated the association between TBQ scores and patients' sex, age, education level, employment status, type of MS, disease duration, comorbidities, EDSS, pharmacological treatment and medication adherence. RESULTS: The questionnaire presented a 3-factor structure in which burden was related to pharmacological treatment; comprehensive health assistance; and psycho-social-economic context. Composite reliability was > 0.8 for all factors. TBQ showed positive correlation with fatigue (rs = 0.467, p = 0.006), negative correlation with QoL (rs - 0.446, p = 0.009). For the second cohort, total TBQ score was 43 (SD 29). Lowest scores were observed on self-monitoring (0.53, SD 1.3) and highest for administrative load (4.2, SD 3.4). Inverse association was found between the TBQ score and medication adherence (r 0.243 p = 0.001). TBQ scores also correlated with daily patient pill/injection requirements (r 0.175 p = 0.020). Individuals receiving injectable treatment scored higher than patients on oral drugs (total TBQ 51 (SD 32) vs 39 (SD 27) p = 0.002). CONCLUSIONS: The TBQ in Spanish is a reliable instrument and showed adequate correlation with QoL and adherence scales in MS patients. TBQ may benefit health resources allocation and provide tailor therapeutic interventions to construct a minimally disruptive care.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Tradução / Inquéritos e Questionários / Efeitos Psicossociais da Doença / Esclerose Múltipla Tipo de estudo: Etiology_studies / Incidence_studies / Observational_studies / Qualitative_research / Risk_factors_studies Aspecto: Patient_preference Limite: Adult / Female / Humans / Male / Middle aged País/Região como assunto: America do sul / Argentina Idioma: En Revista: BMC Neurol Assunto da revista: NEUROLOGIA Ano de publicação: 2019 Tipo de documento: Article País de afiliação: Argentina País de publicação: Reino Unido

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Tradução / Inquéritos e Questionários / Efeitos Psicossociais da Doença / Esclerose Múltipla Tipo de estudo: Etiology_studies / Incidence_studies / Observational_studies / Qualitative_research / Risk_factors_studies Aspecto: Patient_preference Limite: Adult / Female / Humans / Male / Middle aged País/Região como assunto: America do sul / Argentina Idioma: En Revista: BMC Neurol Assunto da revista: NEUROLOGIA Ano de publicação: 2019 Tipo de documento: Article País de afiliação: Argentina País de publicação: Reino Unido