Clinical manifestations and quality of life in hidradenitis suppurativa patients: survey of participants from an internet support group

Abstract: Background: Hidradenitis suppurativa is a complex and infrequent autoinflammatory disease that impacts on quality of life. Its pathogenesis is not fully understood, which limits the development of curative treatments. Objectives: To evaluate clinical and quality of life aspects of hidradenitis suppurativa patients from a social group on the Internet. Methods: A cross-sectional, Internet-based survey study among participants in a discussion group (Facebook) of individuals with hidradenitis suppurativa. Patients were asked to answer a questionnaire about clinical-demographic aspects and quality of life (DLQI-BRA). Results: A total of 390 individuals agreed to participate in the study, 82% of them female, median age (p25-p75), of 31 (25-37) years old, disease onset at 15 (13-23) years, family member affected in 20% of cases, overweight (BMI 29 [25-33]) kg/m2 and severe impact on quality of life (DLQI 20 [13-25]). Regarding Hurley's classification, the participants provided information that enabled classification into: I (19%), II (52%) and III (29%). More severe cases were associated with males (OR = 1.69), higher weight (BMI: OR = 1.03) non-white color (OR = 1.43) and higher frequency of other autoinflammatory diseases (OR = 1.37). Study limitations: Voluntary adherence survey with self-completion of the questionnaire by 390 from about 1600 group members. Conclusions: Hidradenitis suppurativa patients who participated in a social network group had onset of the disease after puberty, with a predominance in females and overweight people, with great impact on the quality of life.

Evaluation and Interpretation of 9 Body Constitution Scores of CCMQ-J by Seven Independent Questionnaires / 日本補完代替医療学会誌

In this study, we proposed an approach to interpret the classification of body constitution based on the Japanese Version of Constitution in Chinese Medicine Questionnaire (CCMQ-J) in terms of an augmented questionnaire combining seven independent questionnaires. The augmented questionnaire consists of 254 questions in terms of seven categories of attributes, which are the (i) basic information (BI), (ii) disease (DI), (iii) social factors (SO), (iv) mental factors (ME), (v) dietary habits (DH), (vi) sleeping state (SL), and (vii) sub-health (SH). The partial least square (PLS) regression has been adopted to model the correlations between the scores of body constitutions and the questions, and their results show that the body constitution can be represented by the linear combination of the questions substantially (correlation coefficients between the true and predicted constitutions are all above 0.7). Moreover, by using the crowdsourcing technique in data collection, a total of 851 samples (350 males and 501 females between 20 and 85 years old) samples with diverse geographical backgrounds in Japan have been collected, from which new medical implications have been extracted through the discussion in a Traditional Chinese Medicine standpoint. This study serves as a crucial step for validating the philosophy of ancient Chinese medicine by the state-of-the-art information science techniques and facilitating the use of the CCMQ-J in public healthcare.

Determination of Optimum Number of Groups on the Crowdsourcing Survey in Japanese People Interpreted by Physical Constitution Defined by CCMQ-J / 日本補完代替医療学会誌

Chinese Medicine Questionnaire (CCMQ-J) consists of sixty independent questionnaires and 9 physical constitutions called subscales. One type is balanced constitution (i.e., gentleness), and the following eight types represent unbalanced constitution: Qi-deficiency constitution, Yang-deficiency constitution, Yin-deficiency constitution, Phlegm-dampness constitution, Damp-heat constitution, Stagnant Blood constitution, Stagnant Qi constitution, and Inherited Special constitution. In this study, we proposed to determine optimal number of groups in 851 participants recruited from crowdsourcing answered CCMQ-J questionnaire consisting of 60 questions. In the present study, we applied k-means clustering with gap statistics to the questionnaire data and the number of optimal groups was estimated by five. The five groups are mainly characterized by 3 subscales in CCMQ-J, i.e. (i) two subscales corresponding to Yang-deficiency and Qi-depress, (ii) three subscales corresponding to gentleness, Yang-deficiency and Qi-depress (iii) Yang-deficiency, (iv) gentleness, and (v) Qi-depress. In the crowdsourcing survey, two subscales, Yang-deficient and Qi-depress are the most frequently occurred in current Japanese people.

Development and Evaluation of a Crowdsourcing Platform for Education and Evidence-Based Medical Decision-Making / Desenvolvimento e Avaliação de uma Plataforma Colaborativa Digital para Educação e Tomada de Decisão Médica Baseada em Evidências

ABSTRACT The medical education for clinical decision-making has undergone changes in recent years. Previously supported by printed material, problem solving in clinical practice has recently been aided by digital tools known as summaries platforms. Doctors and medical students have been using such tools from questions found in practice scenarios. These platforms have the advantage of high-quality, evidence-based and always up-to-date content. Its popularization was mainly due to the rise of the internet use and, more recently, of mobile devices such as tablets and smartphones, facilitating their use in clinical practice. Despite this platform is widely available, the most of them actually present several access barriers as costs, foreign language and not be able to Brazilian epidemiology. A free national platform of evidence-based medical summaries was proposed, using the crowdsourcing concept to resolve those barriers. Furthermore, concepts of gamification and content evaluation were implemented. Also, there is the possibility of evaluation by the users, who assigns note for each content created. The platform was built with modern technological tools and made available for web and mobile application. After development, an evaluation process was conducted by researchers to attest to the valid of content, usability, and user satisfying. Consolidated questionnaires and evaluation tools by the literature were applied. The process of developing the digital platform fostered interdisciplinarity, from the involvement of medical and information technology professionals. The work also allowed the reflection on the innovative educational processes, in which the learning from real life problems and the construction of knowledge in a collaborative way are integrated. The assessment results suggest that platform can be real alternative form the evidence-based medical decision-making.

RESUMO O processo de educação para tomada de decisão médica tem passado por mudanças nos últimos anos. Anteriormente suportada por material impresso, a resolução de problemas da prática clínica passou a contar recentemente com a ajuda de ferramentas digitais conhecidas como plataformas de sumários. Médicos e estudantes de Medicina têm utilizado tais ferramentas quando têm dúvidas encontradas nos cenários de prática. Essas plataformas apresentam como vantagem a presença de conteúdo de alta qualidade, baseado em evidências e sempre atualizado. Sua popularização deu-se sobretudo com a ascensão do uso da internet e, mais recentemente, de dispositivos móveis como tablets e smartphones, facilitando seu uso na prática clínica. Apesar de amplamente disponíveis, a maioria das plataformas atuais apresenta diversas barreiras de acesso, como custo, idioma estrangeiro e não ser adaptada à epidemiologia brasileira. Uma plataforma gratuita e totalmente nacional de sumários médicos baseados em evidências foi proposta, por meio do conceito da construção colaborativa, para contornar essas barreiras. Além disso, foram implementados conceitos de gamificação. Também há a possibilidade de avaliação pelos próprios usuários, que atribuem notas a cada conteúdo desenvolvido. A plataforma foi construída mediante ferramentas tecnológicas modernas e disponibilizada para web e aplicativo para dispositivos móveis. Após o desenvolvimento, um processo de avaliação foi conduzido pelos pesquisadores para atestar a validade do conteúdo, a usabilidade e a satisfação dos usuários. Foram aplicados questionários e ferramentas de avaliação consolidados na literatura. O processo de desenvolvimento da plataforma digital fomentou a interdisciplinaridade, por intermédio do envolvimento de profissionais da área médica e de tecnologia da informação. O trabalho também permitiu a reflexão sobre os processos educacionais inovadores, nos quais o aprendizado fundamentado em problemas da vida real e a construção de conhecimento de forma colaborativa estão integrados. Osresultados da avaliação apontam que a plataforma criada pode se tornar uma alternativa factível para tomada de decisão médica baseada em evidências.

Os fatores determinantes da participação na produção coletiva de ideias para solução de problemas públicos / Los factores determinantes de la participación en la producción colectiva de ideas para solución de problemas públicos / Determinant factors of participation in the co-production of ideas to solve public problems

Resumo Quais os fatores determinantes da participação dos cidadãos na produção coletiva de ideias para solução de problemas públicos? Para responder essa questão, 510 cidadãos, inscritos na plataforma de produção coletiva de ideias Prêmio Ideia, responderam a um questionário apontando o quanto os construtos extraídos da literatura como determinantes da participação em plataformas online seriam decisivos para seu interesse em participar. A análise de equações estruturais aponta que o retorno dado pela instituição pública aos cidadãos e a comodidade determinam o interesse em participar, mas que esse interesse não implica, necessariamente, a participação efetiva. Conclui-se que a aplicação das ideias geradas e o feedback aos participantes são determinantes para a participação social e sugerem-se pesquisas que abordem também as motivações das instituições proponentes em propor tais iniciativas.

Resumen ¿Cuáles son los factores determinantes de la participación de los ciudadanos in la producción colectiva de ideas para la solución de problemas públicos? Para responder a la pregunta, 510 ciudadanos, inscritos en la plataforma de producción colectiva de ideas Premio Ideia, respondiendo a un cuestionario apuntando cuánto son constructos extraídos de la literatura como determinantes de la participación en plataformas en línea, serían decisivas para su interés en participar. El análisis de ecuaciones estructurales apunta que el retorno de una institución pública a los ciudadanos y una comodidad son factores que determinan el interés en participar, pero que ese interés no implica necesariamente en la participación efectiva. Se concluye que la aplicación de las ideas generadas y el feedback a los participantes son determinantes para la participación social y se sugieren investigaciones que aborden también las motivaciones de las empresas proponentes en proponer tales iniciativas.

Abstract What are the determinant factors of citizens' participation in the collective production of ideas to solve public problems? In order to answer this question, 510 citizens, enrolled in Prêmio Ideia, a platform of collective production of ideas, responded to a questionnaire pointing out determinant factors identified in literature about participation in online platforms that are decisive for their own interest in participating. The structural equation analysis highlights that the feedback given by a public institution to citizens and convenience are determinant factors for participation. This interest in participation, however, does not necessarily imply effective participation. It is concluded that the application of the ideas created through the platform and the feedback to the participants are determinants for social participation and the study suggests further research approaching the motivation of companies that propose such initiatives.

Gamificação e crowdsourcing para melhoria do combate ao Aedes aegypti / Gamification and crowdsourcing for strengthening the combat against Aedes aegypti

OBJETIVOS: Criar um sistema baseado em conceitos de gamificação e crowdsourcing, para auxiliar no combate/prevenção ao Aedes aegypti. Com ênfase nos indicadores: número de notificações de focos do mosquito; tempo médio para gerar relatórios utilizados no planejamento e tempo médio entre a notificação e o recebimento da mesma pelo agente de campo. MÉTODOS: Trata-se de um estudo quantitativo-exploratório em parceria com as vigilâncias para a idealização, especificação, implementação e teste piloto do sistema proposto. RESULTADOS: Foi produzido um aplicativo móvel para a população realizar notificações que alimentam um sistema de informação na web, georreferenciado e usado pela VA/VE para apoio à gestão de seus serviços. No piloto foi verificado uma melhoria significativa nos indicadores considerados. CONCLUSÃO: O sistema poderá funcionar como um novo canal de denúncia, assim como auxiliar os processos e serviços da VA/VE para um combate mais eficiente e eficaz ao mosquito e às doenças por ele transmitidas.

OBJECTIVES: Develop and apply a gamified and crowdsourcing information system to speed up and improvedecision making by sanitary and health agencies ("VA/VE") as they attempt to prevent the spread of the zika, dengue, and chikungunya viruses transmitted by the Aedes aegypti mosquito. METHODS: Carry out a quantitative-exploratory study in partnership with VA/VE to specify, implement and (pilot) test the proposed system. RESULTS: The work produceda gamified, crowdsourced mobile app for the population to feed information on Aedes aegypti´s infestation into a georeferenced web information system. VA/VE use this web IS to manage their operations. The pilot test provided evidence that the partner VA/VE was able to make faster and better decisions. CONCLUSION: The proposed IS may serve as a newAedes aegypti infestation notification channel for the population and as a decision support system for VA/VE for more efficient and effective combat against the mosquito and related diseases.