Patient perceptions of disease burden and treatment of myasthenia gravis based on sentiment analysis of digital conversations.

Myasthenia gravis (MG) is a rare, autoimmune, antibody-mediated, neuromuscular disease. This study analyzed digital conversations about MG to explore unprovoked perspectives. Advanced search, data extraction, and artificial intelligence-powered algorithms were used to harvest, mine, and structure public domain digital conversations about MG from US Internet Protocol addresses (August 2021 to August 2022). Thematic analyses examined topics, mindsets, and sentiments/key drivers via natural language processing and text analytics. Findings were described by sex/gender and treatment experience with steroids or intravenous immunoglobulin (IVIg). The 13,234 conversations were extracted from message boards (51%), social media networks (22%), topical sites (21%), and blogs (6%). Sex/gender was confirmed as female in 5703 and male in 2781 conversations, and treatment experience was with steroids in 3255 and IVIg in 2106 conversations. Topics focused on diagnosis (29%), living with MG (28%), symptoms (24%), and treatment (19%). Within 3176 conversations about symptoms, eye problems (21%), facial muscle problems (18%), and fatigue (18%) were most commonly described. Negative sentiments about MG were expressed in 59% of conversations, with only 2% considered positive. Negative conversations were dominated by themes of impact on life (29%), misdiagnosis problems (27%), treatment issues (24%), and symptom severity (20%). Impact on life was a key driver of negativity in conversations by both men (27%) and women (34%), and treatment issues was a dominant theme in conversations by steroid-treated (29%) and IVIg-treated (31%) patients. Of 1382 conversations discussing treatment barriers, 36% focused on side effects, 33% on lack of efficacy, 21% on misdiagnosis, and 10% on cost/insurance. Side effects formed the main barrier in conversations by both steroid-treated and IVIg-treated patients. Capturing the patient voice via digital conversations reveals a high degree of concern related to burden of disease, misdiagnosis, and common MG treatments among those with MG, pointing to a need for treatment options that can improve quality of life.

Análise da rede de apoio social na saúde do trabalhador / Analysis of social support network on occupational health

Objetivos: construir e analisar o componente estrutural da rede de apoio social e compreender as vias e tipos de apoio prestados e as relações existentes entre o trabalhador e os demais indivíduos pertencentes ao seu nicho interpessoal.Metodologia: foi realizada uma análise do discurso de uma entrevista aberta com uma trabalhadora adoecida pelo trabalho. A rede social foi sistematizada em trabalho, família e serviços de saúde e o processo de adoecimento foi dividido nas fases de pré-adoecimento, adoecimento e pós adoecimento. Resultados: na rede social família, pode ser visto que os sujeitos que a compunham na fase de pré adoecimento,passaram a ocupar uma posição mais central em relação à mesma no processo de adoecimento e pós adoecimento.A composição das redes de serviços de saúde e trabalho sofreu grandes mudanças nas relações interpessoais durante o processo de adoecimento, o que dificultou a análise da centralidade de proximidade, e consequentemente a troca de apoios, não demonstrando neste estudo seu potencial. Conclusão: este estudo preliminar auxiliou no entendimento da organização e mutação de algumas redes sociais de um trabalhador ao longo de um processo de adoecimento, contudo, são necessários outros estudos para aprofundar os conhecimentos nesse campo.

Objective: To outline and analyze structural aspects of thesocial support network and to understand the ways andtypes of support provided as well as the relationship betweenthe worker and the other individuals belonging to his/herinterpersonal niche. Methodology: It was conducted adiscourse analysis by means of an open interview with afemale worker sickened by work. The network was dividedinto work, family and health services and the disease processwas divided in the pre-illness, illness and post-illness.Results: Regarding family social network, it was seen thatsubjects who composed it in the pre-illness came to occupya more central position in the illness and post-illness process.The compositions of health services and work underwentsubstantial changes in relationships between subjects duringillness process, which complicates centrality analysis andconsequently exchange of support. Conclusion: Thispreliminary study has helped understanding the organizationof social networks and mutation of a worker over the diseaseprocess. Nevertheless, further studies are needed to deepenthe knowledge in such a field.