Stephanie Easton

and 11 more

Background Many adolescents with asthma have dysfunctional breathing and poor quality of life. Breathing retraining is recommended for symptom management and breathing efficiency. This trial evaluated the feasibility of conducting a definitive trial to evaluate the effectiveness and cost-effectiveness of a digital breathing retraining intervention for adolescents with asthma (Breathe4T – a mobile-friendly website). Specifically, recruitment, follow-up response rates, acceptability and uptake of the intervention and measures, as well as agreement between two quality of life questionnaires were measured. Methods Adolescents (12-17 years) with asthma and impaired quality of life were recruited via UK primary and secondary care clinics and randomised into two, unblinded groups. The intervention group accessed Breathe4T for 6 months whilst the control group gained access after 6 months. Measures included quality of life (paediatric asthma quality of life questionnaire and paediatric quality of life short form), asthma control (asthma control test), healthcare utilisation and demographics at baseline, 2 and 6 months. Website data and interviews explored experiences of the intervention. Results 64 adolescents were randomised. At 2 months 30.2% of participants returned data, however telephone calls improved the rate to 70.3% at 6-month follow-up Breathing retraining was acceptable to adolescents and was perceived to have various benefits. Conclusions The study demonstrates acceptability and feasibility of a future definitive trial to evaluate effectiveness and impacts of a breathing retraining website on quality of life. Implications for recruitment and maximising follow up rates were identified. These learnings are likely to be applicable to other adolescent studies.

Rebecca Knibb

and 12 more

Background. Food allergy (FA) is associated with poor quality of life and high levels of psychological distress. Psychological support is therefore extremely important but is not always available. As part of the Global Access to Psychological Services for Food Allergy (GAPS) Study, we aimed to assess distress and use of psychological services for adults with food allergy. Methods. Participants (n=1329 adults with FA) from >20 countries were recruited through patient organisations, social media adverts and online survey panels to complete an online survey. Surveys were offered in six languages. Results. A total of 67.7% of adults reported they had experienced FA-related psychological distress with the biggest issue being anxiety about having an allergic reaction (64.1%). Only 19.4% had been assessed for FA-related psychological distress; 22.9% had seen a mental health professional for treatment for their FA-related distress. There were significant differences across countries for levels of distress, screening for distress, seeing a mental health professional and being diagnosed with a FA-related mental health disorder (all p<0.001). The UK and Brazil had the highest number of adults reporting distress. The biggest barriers to seeing a mental health professional were cost, lack of insurance coverage, failure to provide a referral, and lack of practitioner in the area. Conclusions. FA-related distress is common in adults. Few have accessed the psychological care and support they need and there is significant variability across countries. Clinicians should consider routine assessment of adults for distress and easily accessible resources are needed to help support adult patients.

Rebecca Knibb

and 7 more

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.

Rebecca Knibb

and 1 more

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.

Marta Vazquez-Ortiz

and 20 more

Rosan Meyer

and 11 more

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.

Rebecca Knibb

and 7 more

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.

Graham Roberts

and 20 more

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.