Conversations about food allergy risk with restaurant staff when eating out: A customer perspective

A significant proportion of food-induced allergic reactions occur whilst dining outside the home, often due to failures in communication. This study aimed to examine the nature of conversations about risk that customers with food allergies have with restaurant staff when eating out. A secondary analysis of qualitative data, generated through interviewing 39 consumers with severe food allergies across three primary studies, was conducted. Thematic analysis was used to process the data. Conversations with staff about risk were commonly initiated under circumstances of uncertainty, unfamiliarity and lack of knowledge and information. Re-establishing a ‘contract of care’ with familiar food venues and perceived shortcomings in early interactions with staff were further drivers of initiating risk conversations. Two major constraints to risk conversations were identified: being seen as ‘fussy’ or as a ‘nuisance’. To avoid them being perceived as ‘fussy’ by asking questions about food, consumers framed their conversations with staff in terms of risk, revealing their allergy and its possible impact on health to validate their enquiries. Paradoxically, declaring the allergy and seeking staff acknowledgment of the severity of the condition could make participants feel that they were perceived by staff as a nuisance. These dilemmas sometimes limited conversations and constrained customers' risk management. Experiencing trustworthy interactions with staff was not only contingent on evidence of their knowledge about the food contents and understanding of food allergies but was also based on manifestations of genuine customer care. When managing a food allergy outside the home, establishing risk and safety are products of, and are embedded within, relations and interactions with others. Risk conversations seek to establish trustworthy interactions as the basis on which safety can be maximised and risks – both health and social – minimised

Pathways to antibiotics in Bangladesh: a qualitative study investigating how and when households access medicine including antibiotics for humans or animals when they are ill

Background To understand how to reduce antibiotic use, greater knowledge is needed about the complexities of access in countries with loose regulation or enforcement. This study aimed to explore how households in Bangladesh were accessing antimicrobials for themselves and their domestic animals. Methods In-depth interviews were conducted with 48 households in one urban and one rural area. Households were purposively sampled from two lower income strata, prioritising those with under 5-year olds, older adults, household animals and minority groups. Households where someone was currently ill with a suspected infection (13 households) were invited for a follow-up interview. Framework analysis was used to explore access to healthcare and medicines. Findings People accessed medicines for themselves through five pathways: drugs shops, private clinics, government/charitable hospitals, community/family planning clinics, and specialised/private hospitals. Drug shops provided direct access to medicines for common, less serious and acute illnesses. For persistent or serious illnesses, the healthcare pathway may include contacts with several of these settings, but often relied on medicines provided by drug shops. In the 13 households with an unwell family member, most received at least one course of antibiotics for this illness. Multiple and incomplete dosing were common even when prescribed by a qualified doctor. Antibiotics were identified by their high cost compared to other medicines. Cost was a reported barrier to purchasing full courses of antibiotics. Few households in the urban area kept household animals. In this rural area, government animal health workers provided most care for large household animals (cows), but drug shops were also important. Conclusions In Bangladesh, unregulated drug shops provide an essential route to medicines including those prescribed in the formal sector. Wherever licensed suppliers are scarce and expensive, regulations which prohibit this supply risk removing access entirely for many people

The Controversies and Difficulties of Diagnosing Primary Ciliary Dyskinesia

We welcome the correspondence from Lavie and Amirav (1), highlighting the difficulties diagnosing primary ciliary dyskinesia (PCD) and the role of high-speed video analysis (HSVA). As members of the European Respiratory Society (ERS) PCD Diagnostic Task Force (2) and/or large PCD Centres, we agree that HSVA has an important role that is not recognized by the American Thoracic Society (ATS) PCD Diagnostic Guideline (3). This risks a large proportion of false-negative “missed” diagnoses and a sizable number of false-positive cases; we make additional important observations.</div

Uma análise bibliométrica da literatura internacional sobre colaboração na cadeia de suprimentos

Collaboration has been recognized as an important strategy for supply chain management success. However, previous studies suggest that this issue is little understood and explored, in terms of identifying and organizing the content already developed, as well as in providing reflections and alternatives for its appropriation in the organizational environment. This work sheds light on these issues and aims at systematically mapping the international scientific production on collaboration in supply chain. Bibliometric methods were used by means of structured mapping and systematic analysis of publications found on the Web of Science – Social Sciences Citation Index (WoS-SSCI) database up to 2014. As a result, 173 were retrieved, which were published in 68 journals and written by 380 authors associated with 226 institutions of 32 countries. The bibliometric analysis allowed us to identify the journals that stand out because of the high count of citations and number of articles, which could be used as reference for future studies in this area; among them is the Supply Chain Management an International Journal. From the systematic analysis of highly cited papers and recent papers, we observed a predominance of quantitative studies using surveys and some using structural equation modeling. Based on the paper analysis, we identified some gaps and opportunities for future research. It thus follows that collaboration within the supply chains context is a relevant matter with increasing academic interest, which needs to be further studied for theoretical development and practical implications.Keywords: collaboration, supply chain, bibliometric study.A colaboração tem sido reconhecida como uma importante estratégia para o sucesso da gestão da cadeia de suprimentos. Entretanto, estudos anteriores sugerem que se trata de um tema pouco compreendido e explorado, tanto no sentido de identificar e organizar o conteúdo já desenvolvido quanto no de proporcionar reflexões para a sua apropriação no ambiente organizacional. Este trabalho lança luz sobre essas questões e tem por objetivo mapear sistematicamente a produção científica internacional sobre a colaboração na cadeia de suprimentos. O método utilizado foi o estudo bibliome?trico, por meio do mapeamento estruturado e da análise sistemática das publicações localizadas na base Web of Science – Social Sciences Citation Index (WoS-SSCI) até o ano 2014. Como resultado, foram recuperados 173 artigos, os quais estão publicados em 68 periódicos e escritos por 380 autores vinculados a 226 instituições de 32 países. Entre outros resultados da análise bibliométrica, foram identificados os periódicos que se destacam devido aos altos números de citações e quantidades de artigos, os quais poderão ser tomados como referência para futuras pesquisas nesta área – entre eles está o Supply Chain Management an International Journal. A partir da análise sistemática, verificou-se que a maioria dos artigos selecionados são estudos empíricos com abordagem quantitativa que utilizam survey e alguns que empregam a modelagem de equações estruturais. Nos textos analisados, foi identificado um amplo leque de lacunas e oportunidades para a realização de futuros estudos na área. Conclui-se, portanto, que a colaboração no contexto da cadeia de suprimentos é um assunto relevante e de crescente interesse acadêmico que ainda carece de estudos aprofundados para desenvolvimento teórico e implicações práticas.Palavras-chave: colaboração, cadeia de suprimentos, estudo bibliométrico

Consumer preferences for written and oral information about allergens when eating out

Understanding the subtle negotiations and difficulties encountered by FA/FIs when eating out can serve as a guide for legislators and food providers; by encouraging provision of clear written and verbal allergen information, and training of proactive, allergen-aware staff. This, in tandem with legal requirements for allergen information provision, paves the way for FA/FIs to feel more confident in eating out choices; and to experience improved eating out experiences

Validation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD)

Background: Quality of life (QOL)-primary ciliary dyskinesia (PCD) is the first disease-specific, health-related QOL instrument for PCD. Psychometric validation of QOL-PCD assesses the performance of this measure in adults, including its reliability, validity and responsiveness to change. Methods: Seventy-two adults (mean (range) age: 33 years (18–79 years); mean (range) FEV1% predicted: 68 (26–115)) with PCD completed the 49-item QOL-PCD and generic QOL measures: Short-Form 36 Health Survey, Sino-Nasal Outcome Test 20 (SNOT-20) and St George Respiratory Questionnaire (SGRQ)-C. Thirty-five participants repeated QOL-PCD 10–14 days later to measure stability or reproducibility of the measure. Results: Multitrait analysis was used to evaluate how the items loaded on 10 hypothesised scales: physical, emotional, role and social functioning, treatment burden, vitality, health perceptions, upper respiratory symptoms, lower respiratory symptoms and ears and hearing symptoms. This analysis of item-to-total correlations led to 9 items being dropped; the validated measure now comprises 40 items. Each scale had excellent internal consistency (Cronbach's α: 0.74 to 0.94). Two-week test–retest demonstrated stability for all scales (intraclass coefficients 0.73 to 0.96). Significant correlations were obtained between QOL-PCD scores and age and FEV1. Strong relationships were also found between QOL-PCD scales and similar constructs on generic questionnaires, for example, lower respiratory symptoms and SGRQ-C (r=0.72, p<0.001), while weak correlations were found between measures of different constructs. Conclusions: QOL-PCD has demonstrated good internal consistency, test–retest reliability, convergent and divergent validity. QOL-PCD offers a promising tool for evaluating new therapies and for measuring symptoms, functioning and QOL during routine care

International BEAT-PCD consensus statement for infection prevention and control for primary ciliary dyskinesia in collaboration with ERN-LUNG PCD Core Network and patient representatives

Discinesia ciliar primaria; Consenso; Prevención de infeccionesDiscinèsia ciliar primària; Consens; Prevenció d'infeccionsPrimary ciliary dyskinesia; Consensus; Infection preventionIntroduction In primary ciliary dyskinesia (PCD) impaired mucociliary clearance leads to recurrent airway infections and progressive lung destruction, and concern over chronic airway infection and patient-to-patient transmission is considerable. So far, there has been no defined consensus on how to control infection across centres caring for patients with PCD. Within the BEAT-PCD network, COST Action and ERS CRC together with the ERN-Lung PCD core a first initiative has now been taken towards creating such a consensus statement. Methods A multidisciplinary international PCD expert panel was set up to create a consensus statement for infection prevention and control (IP&C) for PCD, covering diagnostic microbiology, infection prevention for specific pathogens considered indicated for treatment and segregation aspects. Using a modified Delphi process, consensus to a statement demanded at least 80% agreement within the PCD expert panel group. Patient organisation representatives were involved throughout the process. Results We present a consensus statement on 20 IP&C statements for PCD including suggested actions for microbiological identification, indications for treatment of Pseudomonas aeruginosa, Burkholderia cepacia and nontuberculous mycobacteria and suggested segregation aspects aimed to minimise patient-to-patient transmission of infections whether in-hospital, in PCD clinics or wards, or out of hospital at meetings between people with PCD. The statement also includes segregation aspects adapted to the current coronavirus disease 2019 (COVID-19) pandemic. Conclusion The first ever international consensus statement on IP&C intended specifically for PCD is presented and is targeted at clinicians managing paediatric and adult patients with PCD, microbiologists, patient organisations and not least the patients and their families.Ministerstvo Zdravotnictví Ceské Republiky (grant nr. NV-19-07-00210.) European Reference Network for Rare Respiratory Diseases (Project ID No 739546.) Børnelungefonden European Cooperation in Science and Technology (COST Action BM 1407) Danmarks Lungeforening European Respiratory Society (CRC

Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials

Pulmonary exacerbations; Primary ciliary dyskinesia; DefinitionEmpitjorament pulmonar; Discinèsia ciliar primària; DefinicióEmpeoramiento pulmonar; Discinesia ciliar primaria; DefiniciónPulmonary exacerbations are a cause of significant morbidity in patients with primary ciliary dyskinesia (PCD) and are frequently used as an outcome measure in clinical research into chronic lung diseases. So far, there has been no consensus on the definition of pulmonary exacerbations in PCD. 30 multidisciplinary experts and patients developed a consensus definition for children and adults with PCD. Following a systematic review, the panel used a modified Delphi process with a combination of face-to-face meetings and e-surveys to develop a definition that can be used in research settings for children and adults with PCD. A pulmonary exacerbation was defined by the presence of three or more of the following seven items: 1) increased cough, 2) change in sputum volume and/or colour, 3) increased shortness of breath perceived by the patient or parent, 4) decision to start or change antibiotic treatment because of perceived pulmonary symptoms, 5) malaise, tiredness, fatigue or lethargy, 6) new or increased haemoptysis, and 7) temperature >38°C. The consensus panel proposed that the definition should be used for future clinical trials. The definition should be validated and the usability assessed during these studies

The patient's experience of primary ciliary dyskinesia: a systematic review

Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. The aim of this study is to critically review, analyse, and synthesise the literature in order to understand the experiences of patients with primary ciliary dyskinesia (PCD) and the impact on health-related quality of life. MEDLINE, EBSCO, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO and EMBASE were searched according to the inclusion criteria. A qualitative analysis of 14 studies was conducted. Fourteen studies were included in the review, five with qualitative methodologies. Studies originated from the UK, USA, Italy, Denmark and Belgium, one study included a survey distributed internationally. Significant relationships were found between age and worsening of respiratory symptoms, physical, and mental domains of health-related quality of life, with a greater decline compared with reference populations. Variations between the UK and Italy were found for health-related quality of life and its correlation with time since diagnosis. PCD was found to have a physical impact in all age groups: patients found it difficult to keep up with others, and found energy levels were easily depleted compared to family or peers. In terms of social impact, symptoms lead to embarrassment and a sense of isolation, with patients concealing symptoms and/or their diagnosis. In turn, isolation was also linked with the lack of public and medical knowledge. In relation to emotional impact, anxiety was reported in a number of qualitative studies; patients were anxious about getting sick or when thinking about their future health. The burden of treatment and factors influencing adherence were also discussed in depth. Health-related quality of life decreases with age in patients with PCD. For all age groups, PCD was found to greatly impact physical, emotional, social functioning, and treatment burden. More research is needed on the psychosocial impact of the illness, disease burden and its effect on quality of life