Public involvement in chronic respiratory diseases research: A qualitative study of patients', carers' and citizens' perspectives.

INTRODUCTION: Patient and public involvement (PPI) initiatives involving patients with chronic respiratory disease (CRD) are rare. Therefore, this study aimed to explore the perspectives of patients with CRD, carers and interested citizens regarding the relevance and need for a PPI network and suggestions for its implementation. METHODS: A qualitative study based on focus groups was conducted. Recruitment occurred through invitations on social media platforms and to patients who have participated in previous asthma studies of the team. Three focus groups were conducted, via video conference, using a semi-structured guide. Thematic analysis was performed by two independent researchers and discussed with the extended team. RESULTS: Fifteen patients with CRD, one carer and one interested citizen (13 females, median 36 (range: 18-72) years) participated. All participants acknowledged the importance of implementing a collaborative network and demonstrated interest in being integrated. Participants acknowledged the importance of their involvement in several phases of the research cycle. The main aim identified for this network was to facilitate communication between patients and researchers. Participants regarded the integration of patients, carers, researchers and healthcare professionals from different scientific areas as relevant. The use of digital platforms to attract members and support the work, together with group dynamics and regular meetings, were some of the most relevant practical considerations for implementing the network. The identified facilitators for their engagement were sharing experiences, researchers' and healthcare professionals' support and feedback and schedule flexibility. The identified barriers included the amount of time dedicated, low health/digital literacy and the potential detachment of nondiagnosed patients or those with low symptom impact in daily life. CONCLUSION: Patients, carers and citizens acknowledged the relevance of implementing a collaborative network and demonstrated interest in active participation in every stage of the health research cycle. A deeper knowledge of the barriers and facilitators identified in this study could support implementing these initiatives in Portugal. PATIENT OR PUBLIC CONTRIBUTION: This study was designed by a research team that included one patient with asthma and one carer. They were specifically involved in building the study protocol and the interview guide. They also gave feedback regarding the electronic consent form and the short sociodemographic questionnaire created, namely by removing noncontributing words or phrases and rewording expressions. The lay summary was written by another patient with asthma. All participants of this study were invited to implement and integrate the ConectAR network-a collaborative network of research in respiratory health. PUBLIC SUMMARY: In Portugal, chronic respiratory patients do not have an active role as 'coinvestigators'. This study aimed to acknowledge if patients and citizens considered a patient and public involvement network useful, whose main purpose would be to facilitate communication between patients and researchers. A study based on online group interviews was carried out with patients with chronic respiratory diseases and interested citizens, both recruited on social media platforms. Participants considered that bringing together patients, carers, researchers and healthcare professionals is valuable because sharing different experiences and perspectives may help patients to improve their daily lives and increase research quality. In conclusion, patients agree that implementing a collaborative network with researchers and healthcare professionals and participating in the health research cycle is quite preponderant. Acknowledging what can help and deter this network may be beneficial to implementing this type of initiative in Portugal.

Poluição intra e extradomiciliar: [revisão] / Indoor and outdoor pollution: [review]

Objetivo: Abordar alguns aspectos da poluição do ar e sua influênciasobre a saúde dos indivíduos, dando maior ênfase aos efeitos sobre oaparelho respiratório.Fontes de dados: Artigos originais, revisões e consensos indexadosnos bancos de dados PubMed, Medline e SciELO nos últimos 30 anos,assim como a linha de pesquisa desenvolvida pelos autores no LaboratórioMultidisciplinar da Universidade Federal do Rio de Janeiro para aelaboração de suas Teses de Doutorado.Síntese dos dados: Crescentes evidências demonstram que aexposição a certos poluentes aéreos pode aumentar a resposta a alérgenos,fazendo com que indivíduos com doenças respiratórias (asmae/ou rinite) sejam especialmente susceptíveis ao impacto dos poluentesintra ou extradomiciliares.Comentários: O conhecimento dos mecanismos através dos quaisa poluição agrava os sintomas da rinite e da asma e sua provável relaçãocom o aumento da prevalência dessas doenças é fundamental naimplementação de medidas apropriadas de prevenção.

Objective: To discuss some aspects of the air pollution and theinfluence on the population’s health, giving more emphasis on therespiratory tract effects.Sources: Original articles, reviews and consensus indexed inPubMed, MEDLINE and SciELO databases in the last 30 years. In addition,the results of the research that was developed by the authors in theMultidisciplinary Laboratory of the Federal University of Rio de Janeirofor the development of their PhD thesis.Results: Growing evidences show that the air pollutants exposurecan increase the reaction to allergens, making individuals with respiratorydiseases (asthma and/or rhinitis) more susceptible to the impact ofindoor or outdoor pollution.Comments: Knowledge of the mechanisms through them thepollution get worse the symptoms of rhinitis and asthma and the probablerelation with the increased prevalence of these diseases is fundamentalfor appropriate prevent measures implementation.

Sinusite fúngica alérgica: atualizaçäo / Allergic fungal sinusitis: an update

Objetivos: Rever os conhecimentos sobre sinusite fúngica alérgica, fornecendo uma atualizaçao sobre o tema. Método: Utilizando como fontes de referências bibliográficas o MEDLINE e o LILACS, foi realizada uma pesquisa abrangendo os últimos dez anos. Resultados: Desde as primeiras observaçoes de McCarthy e Pepys na década de 70 muito se descobriu a respeito da história natural e da patogênese das sinusites fúngicas. A sinusite fúngica alérgica é uma forma de sinusite descrita mais recentemente. O uso da tomografia computadorizada, da ressonância nuclear magnética e da cirurgia endoscópica vêm permitindo um diagnóstico e acompanhamento mais adequados. Conclusao: A sinusite fúngica alérgica vem sendo reconhecida como uma importante causa de sinusite crônica. Novos estudos sao necessários para definir a melhor terapêutica.