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Introdução: A esclerose múltipla é uma doença inflamatória do sistema nervoso central de etiologia desconhecida, cujo diagnóstico é difícil devido à sua semelhança com outras doenças neurológicas. Embora não exista cura, as terapêuticas actuais visam melhorar a qualidade de vida e reduzir a incapacidade do doente. Estima-se que 85% dos doentes apresentem a forma recorrente-remitente. Objetivo: Contribuir para uma melhor compreensão das necessidades e perspectivas de doentes e médicos relativamente aos medicamentos utilizados no tratamento da esclerose múltipla, identificando eventuais discrepâncias entre as percepções de eficácia, segurança e conveniência. Métodos: foi realizado um estudo qualitativo transversal com recurso a questionários online administrados a 25 doentes com EM confirmada (critérios de McDonald, idade 18-65 anos, em tratamento há pelo menos seis meses) e a cinco médicos especialistas com pelo menos três anos de experiência no acompanhamento de doentes com esclerose múltipla. Os inquiridos foram recrutados por meio de suas redes sociais em grupos de pessoas com EM, através de convite direto pelas plataformas Facebook e Instagram, através de amostragem em bola de neve. O questionário abordou variáveis demográficas, forma e tempo de diagnóstico, scores da Escala Expandida do Estado de Incapacidade (EDSS), histórico de tratamento, benefícios e limitações dos medicamentos, bem como perspectivas sobre acesso à informação, recursos e estratégias de monitorização. Resultados: entre os doentes, 88% eram do sexo feminino, com idade média de 43,4 ± 8,6 anos, e 72% estavam em uso de terapias de segunda geração. 60% foram capazes de indicar o seu EDSS e 40% descreveram o seu estado de saúde de forma subjectiva. A maior parte dos doentes apresenta incapacidades leves a significativas, faz uso de terapias medicamentosas avançadas e enfrenta desafios de acesso e qualidade de vida, destacando a necessidade de informações segmentadas e melhor coordenação de cuidados. Os médicos salientaram a necessidade de medicamentos remielinizantes, de uma monitorização mais abrangente dos sintomas não motores, de apoio multidisciplinar e de barreiras no acesso aos novos medicamentos, devido aos custos e à burocracia. Conclusão: A integração das percepções revelou a urgência de desenvolver terapias remielinizantes e neuroprotetoras, de melhorar a avaliação da incapacidade para além dos sintomas motores e de reforçar o modelo de cuidados multidisciplinares apoiado na educação médica e do doente. As barreiras sistémicas ao acesso a medicamentos e à disponibilidade de recursos continuam a exigir ajustes nas políticas de saúde e investimentos em tecnologias digitais de monitorização e apoio.
ABSTRACT Introduction: Multiple sclerosis is an inflammatory disease of the central nervous system of unknown aetiology, which is difficult to diagnose due to its similarity to other neurological diseases. Although there is no cure, current therapies aim to improve quality of life and reduce disability in patients. It is estimated that 85% of patients have the relapsing-remitting form. Objective: to contribute to a better understanding of the needs and perspectives of patients and physicians regarding the drugs used in the treatment of multiple sclerosis, identifying any discrepancies between perceptions of efficacy, safety, and convenience. Methods: A qualitative cross-sectional study was conducted using online questionnaires administered to 25 patients with confirmed MS (McDonald criteria, aged 18-65 years, in treatment for at least six months) and five specialist physicians with at least three years of experience in monitoring patients with multiple sclerosis. Participants were recruited through their social networks in groups of people with MS, through direct invitation via Facebook and Instagram platforms using snowball sampling. The questionnaire addressed demographic variables, form and time of diagnosis, Expanded Disability Status Scale (EDSS) scores, treatment history, benefits and limitations of medications, as well as perspectives on access to information, resources and monitoring strategies. Results: among the patients, 88% were female, with a mean age of 43.4 ± 8.6 years, and 72% were using second-generation therapies. 60% were able to indicate their EDSS, and 40% described their health status subjectively. Most patients have mild to significant disabilities, use advanced drug therapies, and face challenges in access and quality of life, highlighting the need for targeted information and better coordination of care. Physicians emphasised the need for remyelinating drugs, more comprehensive monitoring of non-motor symptoms, multidisciplinary support, and barriers to accessing new drugs due to costs and bureaucracy. Conclusion: The integration of perceptions revealed the urgency of developing remyelinating and neuroprotective therapies, improving disability assessment beyond motor symptoms, and strengthening the multidisciplinary care model supported by medical and patient education. Systemic barriers to access to medicines and resource availability continue to require adjustments in health policies and investments in digital monitoring and support technologies.
ABSTRACT Introduction: Multiple sclerosis is an inflammatory disease of the central nervous system of unknown aetiology, which is difficult to diagnose due to its similarity to other neurological diseases. Although there is no cure, current therapies aim to improve quality of life and reduce disability in patients. It is estimated that 85% of patients have the relapsing-remitting form. Objective: to contribute to a better understanding of the needs and perspectives of patients and physicians regarding the drugs used in the treatment of multiple sclerosis, identifying any discrepancies between perceptions of efficacy, safety, and convenience. Methods: A qualitative cross-sectional study was conducted using online questionnaires administered to 25 patients with confirmed MS (McDonald criteria, aged 18-65 years, in treatment for at least six months) and five specialist physicians with at least three years of experience in monitoring patients with multiple sclerosis. Participants were recruited through their social networks in groups of people with MS, through direct invitation via Facebook and Instagram platforms using snowball sampling. The questionnaire addressed demographic variables, form and time of diagnosis, Expanded Disability Status Scale (EDSS) scores, treatment history, benefits and limitations of medications, as well as perspectives on access to information, resources and monitoring strategies. Results: among the patients, 88% were female, with a mean age of 43.4 ± 8.6 years, and 72% were using second-generation therapies. 60% were able to indicate their EDSS, and 40% described their health status subjectively. Most patients have mild to significant disabilities, use advanced drug therapies, and face challenges in access and quality of life, highlighting the need for targeted information and better coordination of care. Physicians emphasised the need for remyelinating drugs, more comprehensive monitoring of non-motor symptoms, multidisciplinary support, and barriers to accessing new drugs due to costs and bureaucracy. Conclusion: The integration of perceptions revealed the urgency of developing remyelinating and neuroprotective therapies, improving disability assessment beyond motor symptoms, and strengthening the multidisciplinary care model supported by medical and patient education. Systemic barriers to access to medicines and resource availability continue to require adjustments in health policies and investments in digital monitoring and support technologies.
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Esclerose múltipla Terapêuticas modificadoras da doença Necessidades dos doentes Perspetiva do doente Perspetiva do médico Qualidade de vida Multiple sclerosis Disease modifying therapies Patient needs Patient perspective Physician perspective Quality of life MGATS