ABSTRACT
BACKGROUND AND AIMS: Myasthenia Gravis requires expert treatment from specialized neurologists. In Germany, this treatment is mainly provided by 18 Integrated Myasthenia Centers (iMZ) accredited by the German Myasthenia Gravis Association (DMG). The DMG is a large and well-organized patient organisation that is regarded as a trusted source for disease-specific information. The aim of this study was to analyse the type of requests that each of these institutions receives in order to identify any potential unmet needs regarding the availability of advice for patients and caregivers. This data can then be used in further research to tailor modern digital communication tools to the specific needs of MG patients. METHODS: Counselling requests sent via e-mail to both institutions were extracted for defined examination periods and divided into a period 'before COVID-19 pandemic' (01.07.2019-31.12.2019) and 'during COVID-19 pandemic' (01.07.2020-31.12.2020). Requests were then analysed using four main categories: medical requests, organisational issues, COVID-19 and social legislation inquiries. RESULTS: One thousand seven hundred eleven requests for advice were addressed to DMG and iMZ Charité. Most inquiries directed to the DMG (47%; n = 750) were related to medical issues, most frequently to side effects of medications (n = 325; 20%) and questions about treatment (n = 263; 16%), followed by inquiries regarding organisational issues (26%; n = 412). About half of the inquiries (n = 69; 58%) to the iMZ Charité were related to medical issues and almost one in three inquiries concerned organisational issues (n = 37; 30%). About one in ten inquiries concerned socio-legal matters (iMZ: n = 7; 6% and DMG: n = 177; 11%). During the pandemic, COVID-19 related issues accounted for 8% (n = 6) of inquiries at iMZ, and 16% (n = 253) at DMG. CONCLUSIONS: MG sufferers have a high demand for timely advice. In the current setting, they address their requests to both iMZs and the DMG via e-mail. Our findings confirm that the DMG is highly trusted by patients and caregivers and is used to obtain second opinions. A relevant proportion of requests to the iMZ could be answered more effectively through standardized responses or improved process management. The implementation of modern digital solutions, including telemedicine, for communication between patient and specialist should be evaluated in further research.
Subject(s)
COVID-19 , Pandemics , Humans , Retrospective Studies , Germany/epidemiologyABSTRACT
Due to the declining mortality rates, malignant diseases have gained a chronic character for many gynaeco-oncology patients. The patients can expect to participate in social life and to an increasing extent in professional life for longer lengths of time. Promotion of rehabilitation and participation is an issue of the German 9th Social Security Code that explicitly places a focus on women. This is mainly of relevance for tumour patients with regard to assessment of the degree of severe disability, to compensate for disease-induced impairments and the possibilities for improving the participation of the afflicted subjects, especially by means of protective rights in professional life. Indeed, tumour patients do sometimes find themselves confronted with conflicting priorities between the entitlements guaranteed by social legislation and the compensation conferred by the health-care services, which can then be avoided when the facts are sufficiently known. For this purpose, the physician must be fully aware of the legal situation. The present article provides an overview of the procedures and reference points for appraisals. Patients need partners among their responsible physicians to help in the assertion of their claims. From the physician's side it is necessary to classify the reported complaints within the ever increasing knowledge about the direct side effects and the long-term side effects of cancer therapies. Against the background of an often life-long mental stress and the uncertain risk of recurrence, it should also be considered whether the concept of healing probation is in support of the targets of long-term disease management and social reintegration, also in the interest of society in general.
ABSTRACT
El crecimiento de la economía informal mundial ha generado el no acceso de los trabajadoresinformales a los mecanismos formales de seguridad social. El objetivo de este artículo es revisarlas políticas públicas en seguridad social dirigidas a proteger a los trabajadores informales enColombia y analizarlas a la luz de la situación de otros países de América Latina. Se realizó unarevisión bibliográfica con análisis documental, en el contexto del Sistema General de SeguridadSocial, y se analizó comparativamente con otros países latinoamericanos. Se concluye que sibien existen políticas para proteger a los trabajadores informales, la afiliación a seguridad socialsigue siendo baja y que esta situación no difiere sustancialmente de la de los demás paísesde América Latina. Se deben generar mecanismos alternativos de aseguramiento para estapoblación, con responsabilidad estatal y que promuevan formas de asociación y organizaciónde las personas ocupadas en este sector...
The growth of the informal economy worldwide has generated no informal workers access toformal social security mechanisms. The purpose of this article is to review the social securitypublic policies aimed at protecting informal workers in Colombia and analyze them in thelight of the situation of other Latin American countries. A literature review was conductedwith documental analysis in the context of the Social Security System, and it was analyzed incomparison with other Latin American countries. We conclude that although there are policiesto protect informal workers, the social security affiliation continues to be low, and this situationdoes not differ substantially from that of other countries in Latin America. Alternative assurancemechanisms must be created for this population, with state responsibility which promote formsof association and organization of people employed in this sector...
O crescimento da economia informal mundial tem gerado o não acesso dos trabalhadores informaisaos mecanismos formais de segurança social. O objetivo deste artigo é revisitar as políticaspúblicas em segurança social dirigidas a proteger os trabalhadores informais na Colômbia eanalisá-las à luz da situação de outros países de América Latina. Realizou-se revisão de literaturacom análise documental no contexto do Sistema Geral de Segurança Social, e analisou-se comparativamentecom outros países latino-americanos. Conclui-se que, embora existam políticaspara proteger aos trabalhadores informais, a afiliação a segurança social continua a ser baixa eque esta situação não difere substancialmente da dos outros países de América Latina. Devemse gerar mecanismos alternativos de seguridade para esta população, com responsabilidadeestatal e que promova formas de associação e organização das pessoas empregadas neste sector...
