Cost analysis of multiple sclerosis in Brazil: a cross-sectional multicenter study.

BACKGROUND: Multiple sclerosis (MS) is a central nervous system disease associated with irreversible progression of disability, which imposes a substantial socioeconomic onus. The objective of this study was to determine the economic impact of multiple sclerosis from the Brazilian household and healthcare system perspectives. Secondary objectives were to assess the impact of fatigue on daily living and health-related quality of life (HRQL) of MS patients. METHODS: This is a cross-sectional study in which Brazilian eligible patients attending eight major MS specialized sites answered an interview capturing data on demographics, disease characteristics and severity, comorbidities, resource utilization, fatigue, utilities and health-related quality of life from November/2011 to May/2012 . Costs were assessed considering a prevalence-based approach within 1 year of resource consumption and were estimated by multiplying the amount used by the corresponding unit cost. Patients were classified as having mild, moderate or severe disability according to the Expanded Disability Status Scale (EDSS). RESULTS: In total, 210 patients who met eligibility criteria were included, 40 % had mild, 43 % moderate and 16 % severe disability; disability level was missing for 1 %. The average total direct cost per year was USD 19,012.32 (SD = 10,465.96), and no statistically significant differences were not observed according to MS disability level (p = 0.398). The use of disease modifying therapies (DMTs) corresponded to the majority of direct expenditures, especially among those patients with lower levels of disability, representing around 90 % of total costs for mild and moderate MS patients. It was also observed that expenses with medical (except DMTs) and non-medical resources are higher among patients with more severe disease. Worsening disability also had an important influence on health-related quality of life and self-perceived impact of fatigue on daily living. CONCLUSION: Our data demonstrates the significant economic impact of MS on both Brazilian household and health system, in terms of DMTs and other disease management costs. When patients move upwards on the disease severity scale, costs with health resources other than drugs are significantly increased.

A Review of Available Treatments, Clinical Evidence, and Guidelines for Diagnosis and Treatment of Pediatric Multiple Sclerosis in the United States.

Pediatric multiple sclerosis is associated with challenges in prompt diagnosis and uncertainty regarding optimal treatment. This review aimed to identify treatment guidelines or consensus statements for pediatric patients with multiple sclerosis, US Food and Drug Administration (FDA)-approved treatment options for pediatric multiple sclerosis, and any randomized controlled trials and observational studies examining available pharmacologic treatments in the pediatric multiple sclerosis population. Literature searches were performed in MEDLINE (1946-2016), EMBASE (1974-2016), and the Cochrane Central Register of Controlled Trials to identify treatment guidelines or consensus statements, pediatric multiple sclerosis treatment approvals, and randomized controlled trials and observation studies that examine the safety and effectiveness of available disease-modifying therapies. Only 3 consensus statements provided recommendations for pharmacologic treatments for children, all 3 published before the most recent revisions of the pediatric multiple sclerosis diagnostic guidelines. Despite the changes to the clinical landscape of pediatric multiple sclerosis with the introduction of diagnostic guidelines, fingolimod is the only FDA-approved treatment for pediatric multiple sclerosis in the United States. The effectiveness and safety of other disease-modifying therapies suggested by consensus statements have been reported in relatively small prospective and retrospective observational studies. Clinical evidence from a recently completed randomized controlled trial and future global registries can inform treatment decisions for the pediatric multiple sclerosis population.

Estudo qualitativo da percepção das pacientes sobre a fibromialgia / Qualitative study of patient’s perception of fibromyalgia

O conhecimento da percepção das pacientes sobre a fibromialgia pode ser utilizado para elaborar estratégias educativas. Essa abordagem pode reduzir a ansiedade gerada pelas incertezas decorrentes da falta de informações. OBJETIVO: conhecer a percepção das pacientes sobre a sua doença. MÉTODOS: estudou-se 15 mulheres que preencheram os Critérios de Classificação para Fibromialgia do Colégio Americano de Reumatologia. Realizou-se estudo qualitativo por meio de entrevistas semi-estruturadas sobre sua percepção da doença, dúvidas, preocupações e qualidade de vida. As informações foram gravadas e classificadas em categorias de relevância para os objetivos propostos. RESULTADOS: observa-se uma uniformidade nas descrições dos quadros clínicos. Dor e fadiga são os sintomas referidos como mais freqüentes e importantes. A dor é de difícil descrição, início insidioso e de intensidade moderada e severa. Registra-se a presença de fatores desencadeantes e moduladores. Outros sintomas descritos como relevantes são distúrbios do sono, ansiedade ou angústia e dificuldade de memória e/ou concentração. Os pacientes descrevem como eventos desencadeantes esforço físico exagerado, atividade ocupacional, trauma físico, variação climática brusca e herança genética. Foi referido pela maioria das pacientes incapacidade total de controlar a intensidade da sintomatologia. Tentativas como apoio religioso, redução na velocidade de execução de tarefas, exercícios físicos leves e períodos curtos de repouso durante o dia foram adotadas pelas pacientes. Quanto ao prognóstico, há uma incerteza para a maioria das pacientes. A principal preocupação é com a evolução para a incapacidade física definitiva. Em relação ao atendimento médico, queixam-se do desconhecimento dos médicos em geral sobre a fibromialgia e indiferença quanto ao seu sofrimento. As principais dúvidas referem-se à natureza da doença e ao prognóstico. CONCLUSÕES: os principais sintomas da fibromialgia são dor e fadiga; a ansiedade é uma característica importante. A incerteza quanto ao prognóstico e medo de incapacidade funcional definitiva é constante.