Primary ciliary dyskinesia is an incurable, rare, inherited, chronic condition. Treatment includes regular clearing of airway mucus, aggressive treatment of infections and management of hearing loss. Caregiver burden has not been explored, hence we interviewed 18 English speaking mothers and 6 English speaking fathers of children under 6 years who were diagnosed with PCD around the world. The parents described how the child's diagnosis, treatment regimen, and health status impacted their life. They discussed the impact of the COVID-19 pandemic and they talked about the different ways they cope with challenges that arise. The need for integrated social care is discussed.

Background: Anaphylaxis is a severe and potentially life-threatening allergic reaction which can have a detrimental impact on quality of life (QoL). There are no validated scales to measure the impact of anaphylaxis on QoL of adults. The aim of this study was to develop and assess the reliability and validity of a QoL scale for adults with anaphylaxis (the A-QoL-Adults). Methods: Interviews were conducted with 13 adults with anaphylaxis; data was analysed using thematic analysis to extract items for a QoL scale. A 28-item prototype QoL scale was then completed by 115 participants (with a confirmed diagnosis of anaphylaxis as per the WAO diagnostic criteria) alongside validated scales to measure generic QoL (WHOQoL BREF), anxiety and depression (HADS) and stress (PSS). All participants were recruited from a specialist allergy clinic. Results: After factor analysis, the A-QoL-Adults scale was reduced to 21 items which had excellent internal reliability (Cronbach’s alpha=0.96). Factor analysis produced 3 sub-scales: Emotional Impact; Social Impact; Limitations on Life. Each had excellent internal reliability (0.92; 0.92; 0.91 respectively). Poorer anaphylaxis-related QoL (total A-QoL-Adults score and sub-scale scores) correlated significantly with poorer general QoL and greater anxiety, depression and stress (all p<0.01 with medium to large effect sizes). Conclusions: The A-QoL-Adults scale is a reliable measure of QoL in adults with anaphylaxis and shows good construct validity. It will offer healthcare professionals a means to further understand the impact of anaphylaxis on adult patients and could help direct and monitor clinical care and the need for further psychological intervention.

Background: Atopic Dermatitis (AD) affects up to 20% of children and significantly negatively impacts their and their caregiver’s quality of life (QoL). Research shows that caregivers with lower QoL may struggle to manage their child’s AD effectively, and modifiable factors that affect their ability include illness perceptions and self-efficacy (SE). The study aimed to investigate the relationship between AD severity, caregiver illness perceptions, QoL and SE in the management of a child’s AD. Methods: 103 caregivers of children with atopic dermatitis completed an online survey consisting of the Patient Oriented Eczema Measure, Dermatitis Family Impact Questionnaire, Parental Self-Efficacy with Eczema Care Index, and Illness Perception Questionnaire - Revised. Results: Correlation analyses showed significant relationships between a child’s AD severity and caregiver illness perceptions, SE and QoL. Certain illness perceptions (consequences and emotional representations) had a greater impact on QoL than AD severity. Hierarchical regression analysis showed that AD severity, illness perceptions and SE predicted 72% of the variance in caregiver QoL. SE mediated the relationship between consequences, illness coherence, personal control, treatment control, timeline acute/chronic, identity and QoL. Conclusion: The findings support the role of illness perceptions and SE in explaining QoL in caregivers of children with AD. Interventions aimed at caregivers to treat AD in children should target both SE and illness perceptions, particularly emotional representations.

Adolescence is a critical stage of rapid biological, emotional and social change and development. Adolescents and young adults (AYA) with asthma and allergies need to develop the knowledge and skills to self-manage their health independently. Healthcare professionals (HCP), parents and their wider network play an essential role in supporting AYA in this process. Previous work showed significant limitations in transition care across Europe. In 2020, the first evidence-based guideline on effective transition for AYA with asthma and allergies was published by EAACI. We herein summarize practical resources to support this guideline’s implementation in clinical practice. For this purpose, multi-stakeholder Task Force members searched for resources in peer review journals and grey literature. These resources were included if relevant and of good quality, and were pragmatically rated for their evidence-basis and user friendliness. Resources identified covered a range of topics and targeted healthcare professionals, AYA, parents/carers, schools, workplace, and wider community. Most resources were in English, web-based and had limited evidence-basis. This position paper provides a valuable selection of practical resources for all stakeholders to support effective transitional care for AYA with asthma and allergies. Future research should focus on developing validated, patient-centred tools to further assist evidence-based transition care.

Gastro-oesophageal reflux (GOR) and food allergy (FA) are common conditions, especially during the first 12 months of life. When GOR leads to troublesome symptoms, that affect daily functioning of the infant and family, it is referred to GOR disease (GORD). The role of food allergens as a cause of GORD remains controversial. This European Academy of Allergy and Clinical Immunology (EAACI) position paper aims to review the evidence for FA-associated GORD in young children and translate this into clinical practice that guides healthcare professionals through the diagnosis of suspected FA-associated GORD and the medical and dietary management. The Task Force (TF) on non-IgE mediated allergy consists of EAACI experts in paediatric gastroenterology, allergy, dietetics and psychology from Europe, United Kingdom, United States, Turkey and Brazil. Six clinical questions were formulated, amended and approved by the TF to guide this publication. A systematic literature search using PubMed, Cochrane and EMBASE databases (until June 2021) using a predefined inclusion criteria based on the 6 questions was used. The TF also gained access to the database from the European Society of Paediatric Gastroenterology and Hepatology working group, who published guidelines on GORD and ensured that all publications used within that position paper were included. For each of the 6 questions, practice points were formulated, followed by a modified Delphi method consisting of anonymous web-based voting that was repated with modified practice points where required, until at least 80% consensus for each practice point was achieved. This TF position paper shares the process, the discussion and consensus on all practice points on FA-associated GORD.

Background. Anaphylaxis is a severe and potentially life-threatening allergic reaction which has a detrimental impact on quality of life (QoL), however little is known about the impact of anaphylaxis, across the various causes, on adults. The aim of this study was to assess the impact of anaphylaxis on QoL and mental health in adults. Methods. Participants (n=142; 60% female) were recruited from a regional allergy centre (Birmingham, U.K) following systematic specialist evaluation. They completed measures of generic QoL (WHOQoL BREF), anaphylaxis specific QoL (A-QoL-Adults), anxiety and depression (HADS) and stress (PSS). Results. Anaphylaxis triggers were mainly to medication or during general anaesthesia (29.6%), food (29.6%), wasp or bee venom (16.2%), or were spontaneous (21.1%). Adults with anaphylaxis had significantly poorer general QoL and stress than published data from a healthy population. Females had significantly poorer anxiety and depression than norm data (all p<0.01). Poorer anaphylaxis specific QoL was significantly related to greater stress, depression, anxiety, poorer general QoL and demographic and clinical variables such as age, gender, severity of anaphylaxis, presence of other atopic conditions (all p<0.05). Regression analysis showed that anxiety, depression and number of anaphylactic reactions were significant predictors for anaphylaxis specific QoL. Conclusions. Anaphylaxis has an adverse impact on QoL and mental health of adults across different triggers. Anxiety, depression and number of reactions in particular seem to be important in explaining the impact on QoL and should be of particular note for clinicians managing adults with this condition, and when considering specialist psychological support.

Adolescent and young adult (AYA) patients need additional support while they experience the challenges associated with their age. They need specific training to learn the knowledge and skills required to confidently self-manage their allergies and/or asthma. Transitional care is a complex process which should address the psychological, medical, educational and vocational needs of AYA in the developmentally appropriate way. The European Academy of Allergy and Clinical Immunology has developed a clinical practice guideline to provide evidence-based recommendations for healthcare professionals to support the transitional care of AYA with allergy and/or asthma. This guideline was developed by a multi-disciplinary working panel of experts and patient representatives based on two recent systematic reviews. It sets out a series of general recommendations on operating a clinical service for AYA, which include: (i) starting transition early (11-13 years), (ii) using a structured, multidisciplinary approach, (iii) ensuring AYA fully understand their condition and have resources they can access, (iv) active monitoring of adherence and (v) discussing any implications for further education and work. Specific allergy and asthma transition recommendations include (i) simplifying medication regimes and using reminders; (ii) focusing on areas where AYA are not confident and involving peers in training AYA patients; (iii) identifying and managing psychological and socioeconomic issues impacting disease control and quality of life; (iv) enrolling the family in assisting AYA to undertake self-management and (v) encouraging AYA to let their friends know about their allergies and asthma. These recommendations may need to be adapted to fit into national healthcare systems.