Asthma is one of the commonest noncommunicable diseases worldwide. Poor clinical outcomes have been reported in asthma amongst ethnic minority groups (EMGs) and reasons are likely to be multifactorial. There is a suggestion that underlying disease may behave differently amongst EMGs, alongside other factors including deprivation, cultural, religious, social, literacy, patient beliefs, healthcare access, treatment adherence, alongside greater burden of multimorbidity. Multimorbidity (presence of ≥ 2 long-term health conditions) in asthma is increasingly known to contribute to greater asthma burden, with differences in multimorbidity burden and patterns seen across ethnicities with a tight association with deprivation. Earlier onset of multimorbidity with relatively reduced survival has been reported amongst EMG patients, particularly those from a deprived background compared to White patients. Data regarding asthma, multimorbidity and ethnicity are scant, but emerging data suggest that multimorbidity is heterogenous, and that ethnic background is associated with variations in asthma outcomes and multimorbidity phenotypes. What is currently lacking is population-based research with a joined-up interrogation of primary care and secondary care databases to determine the prevalence and patterns of T2 and non T2 multimorbidity in asthma amongst EMGs, and analysis of patterns of associations and link to socio-demographic variables and clinical outcomes. Deeper insight into views of EMG patients and their carers regarding lived experiences of asthma and multimorbidity management, as well as those of healthcare professionals is needed, to allow development of culturally tailored resources. These studies are likely to shape a holistic culturally tailored multidimensional and an equitable approach to management of asthma with multimorbidity amongst EMGs.
Objective To examine the mental ill health burden associated with allergic and atopic disorders, in a UK primary care cohort.Design Population-based retrospective open cohort study.Setting United Kingdom.Participants 2 491 086 individuals with primary-care recorded atopic disorder (food allergy, drug allergy, anaphylaxis, urticaria, allergic rhino-conjunctivitis) diagnosis were matched by sex, age (± 2 years), and socio-economic deprivation (Townsend quintile score) at index to 3 120 719 unexposed individuals. The mean age of exposed patients at cohort entry was 39.42 years (SD (SD) 23.65) compared with 35.81 years (SD 22.17) for unexposed patients.Main outcome measures The primary outcome was a composite of mental ill health (severe mental illness, anxiety, depression, eating disorders, obsessive-compulsive disorder (OCD), and self-harm), identified using Read codes. Cox regression was used to estimate adjusted hazard ratios with 95% confidence intervals for the composite mental ill health outcome and each of the individual mental health disorders. Covariates adjusted for were age, sex, alcohol use, smoking status, body mass index (BMI), Townsend deprivation quintile score, asthma exposure, and eczema exposure at baseline.Results Between first January 1995 to 31st January 2022, a total of 2 491 086 eligible individuals were identified with a primary care recorded diagnosis of atopic disease and were matched to 3 120 719 unexposed individuals. 229 124 exposed individuals developed a mental ill health outcome during the study period (incidence ratio (IR) 144.13 per 10 000 person-years) compared with 203 450 in the unexposed group (IR 117.82 per 10 000 person-years). This translated to an adjusted hazard ratio (aHR) of 1.16 (95% CI 1.15 to 1.17). Notably, the risk of anxiety was greatest, aHR 1.22 (95% CI 1.21 to 1.23). Our findings were robust to a sensitivity analysis, where individuals were also matched for asthma and eczema.Conclusion There is an increased risk of mental ill health disorders among patients with diagnosis of an allergic and atopic disorders. There is a need to consider dual delivery of allergy and psychology services to optimise mental well-being among this cohort.
The shift to patient-oriented research, which reflects the voices of patients and caregivers who are experts by experience (EBE),1 has resulted in meaningful research and outcomes. Concurrent shifts towards research that addresses equity, diversity and inclusion have similarly prompted awareness that much research has included patients who represent narrow demographics, specifically affluent White families in high-income countries.2 These shifts are essential and exciting though not without methodological challenges, ranging from ways to respectfully engage underrepresented groups, to interpreting findings through culturally respectful lenses. Food allergy (FA) has substantial psychosocial impacts.3-5 However, less is known about how or if these findings reflect culturally, socioeconomically and geographically diverse populations. Such relevance requires detailed and contextualized understanding, which can be gleaned through qualitative designs. The Global Access to Psychological Services for FA (GAPS; Aston University Research Ethics Committee REC ID number 1621) study aims to explore the need and uptake of psychological services in multiple countries and languages (Figure 1, Panel A). In the present paper, we aimed to provide guidance, informed by our own experiences conducting a multilingual, international qualitative study, for groups wishing to perform similar work (Figure 1, Panel B). To recruit diverse populations within a country, we recruited via multiple methods, including social media and via patient organizations, and selected participants based on gender, age, ethnicity, number and type of allergen(s) and age at diagnosis. All participants provided written informed consent. Semi-structured interview guides were developed through literature review and engagement with content and methodological experts and EBE. For practical reasons, the original development occurred in a single language (English). Translation of the instrument occurred per World Health Organization guidelines and included both forward and backward translation.6 Forward translation involved instrument translation from the original language to the target language(s), a process that required the translator to have language skills at maternal language proficiency, and familiarity with health concepts and terms. Thereafter, interview guides were independently back-translated, during which time the translators did not have access to the document in the original language. Although presented linearly, this process involved several rounds, until the translation was deemed satisfactory and any differences, including unclear/complicated terms, were resolved. Thereafter, the document was considered to be a final translation.6 As those managing FA carry a heavy psychological burden,3-5 more complete insight is gained when participants are able to express themselves in their mother tongue, and wherever possible, with an interviewer who understands age-informed language use, cultural context and vernacular. A lack of such understanding may contribute to erroneous use of a word or misinterpretation of a comment. To this end, interviewers were encouraged to request clarification of a term, despite the interruption. Some researchers collect multilingual qualitative data and complete the translation prior to analysis as it may contribute to the clearer establishment of linkages of transcripts.7 Translation prior to analysis, however, increases the potential for bias where an analyst may not speak the language used to collect data or have the cultural frame of reference to comprehensively interpret the data. Linguistic misinterpretations or incomplete analyses may occur and parts of the original data set may be lost in translation.”8, p. 4 Multiple analysts can provide an opportunity for intercoder reliability—a necessary step in multilingual analysis given the risk of misinterpretation in the absence of a holistic knowledge of the culture and language, including regional variation. This guidance is distinct from triangulation, or the use of multiple data sets, analysts or theories, which is often used to enhance credibility in qualitative analysis.9 Developing a multilingual team was time-intensive and established through existing networks. To facilitate new collaborations, initial contact was with mutually known colleagues. Time demands were substantial, and ranged from translation to differences in institutional processes. Financial resource demands ranged from inter-institutional transfers of funds for research assistant salaries to participant honoraria and translation costs. E-gift cards are a common form of honoraria, but non-standard amounts when distributed in different currencies had varying purchasing capacities. The translation was charged by the word, the price of which was negotiable with the translator given the volume of work. Short-text translations (e.g. social media posts) were more efficiently and cost-effectively translated by the study team. As is good practice for all qualitative research, interviewers were trained to remain professional,9 and empathically neutral,9 and our research team was governed by the ethical approval of our host institution. Herein, our team additionally sought clarification if cultural context or expressions were unclear, and avoided conversation with, or counselling the participant. This included refraining from the use of colloquialisms, which may not be well-received or understood by other cultures/in other languages. Likewise, as cultural norms related to food preparation and childcare differ between countries, interviewers were trained to respectfully and neutrally explore subjects without raising any of their own cultural norms. Finally, as we sought to recruit diverse populations, it behoved the research team to remain mindful of their privilege, both to collect personal data and as a product of their education and employment. Investigations into the psychological burdens of FA must acknowledge participants' rights to fully and freely express themselves in their preferred language. Considerations presented herein are critical for multilingual qualitative studies at every stage of the study, beginning with instrument development and continuing through data collection and analysis. JLPP wrote the first draft of the manuscript and is a GAPS investigator. HB, CJJ, MJM, LJH and RCK contributed to the intellectual content of the manuscript, approved the final version of the manuscript for submission and are GAPS investigators. CR contributed to the intellectual content of the manuscript and approved the final version of the manuscript for submission. Novartis, Aimmune, National Peanut Board, EAACI. JLPP is Section Head, Allied, Canadian Society of Allergy and Clinical Immunology and is on the steering committee for Canada's National Food Allergy Action Plan. She reports consulting for Novartis, Nutricia and ALK Abelló. HB reports research grant support from NIH, Aimmune and DBV Technologies and speaker fees from DBV Technologies and Chair for the Paediatric section 2019–2022 European Academy of Allergy and Clinical Immunology. CJJ reports research grant support from NIHR. MJM reports advisory work for Novartis, University of Michigan, and GA2LEN. LJH reports research support from NIAID and Leidos. CR reports none. RCK reports research grants from NIHR, Food Standards Agency, Aimmune, National Peanut Board, Novartis; honorariums from DBV Technologies, Nutricia; is Chair of the Psychology working group of the BSACI and sits on BSACI council. Research data are not shared.
Psychological distress is common among children with food allergy (FA) and their caregivers. Barriers to mental health (MH) treatment have been identified, yet little is known about experiences and attitudes among patients accessing MH care. As part of the Global Access to Psychological Services for Food Allergy (GAPS) Study, caregivers of children with FA (N=1869) completed online surveys about experiences with psychological services. Most participants (94.4%) lived in Australia, Brazil, Canada, France, Germany, Portugal, Spain, the United Kingdom, or the United States. Twenty-two percent (N=411) of caregivers reported receiving MH treatment for FA-related concerns; 26.4% of these received treatment for themselves, 48.7% for their child, and 24.9% for both. Caregivers asked primary care physicians (32.9%), friends (22.3%), and allergists (11.4%) for provider recommendations. Cognitive behavioral therapy was the most common treatment (43%). Most caregivers were very (42.4%) or somewhat (34.1%) satisfied with their experience. However, 40.0% visited with more than one MH provider because they were not initially satisfied. The majority (62.4%) perceived MH providers were at least somewhat knowledgeable about FA, though estimates across countries varied from 31.8% (Australia) to 96.0% (Portugal). Likewise, most reported MH providers were at least somewhat helpful at addressing FA concerns (72.1%); estimates across countries varied from 45.5% (Australia) to 96.0% (Portugal). Caregivers generally reported satisfaction with MH treatment for FA-related psychological distress and believed their providers were somewhat knowledgeable about FA. However, few received MH recommendations from allergists, many reported needing to try multiple MH providers, and attitudes about experiences varied among countries.
The recognition of constipation as a possible non-Immunoglobulin E (IgE)-mediated allergic condition is challenging because functional constipation (unrelated to food allergies) is a common health problem with a reported worldwide prevalence rate of up to 32.2% in children. However, many studies in children report challenge proven cow's milk allergy and constipation as a primary symptom and have found that between 28% and 78% of children improve on a cow's milk elimination diet. Due to the paucity of data and a focus on IgE-mediated allergy, not all food allergy guidelines list constipation as a symptom of food allergy. Yet, it is included in all cow's milk allergy guidelines available in English language. The Exploring Non-IgE-Mediated Allergy (ENIGMA) Task Force (TF) of the European Academy for Allergy and Clinical Immunology (EAACI) considers in this paper constipation in the context of failure of standard treatment and discuss the role of food allergens as culprit in constipation in children. This position paper used the Delphi approach in reaching consensus on both diagnosis and management, as currently published data are insufficient to support a systematic review.
Immunoglobulin E (IgE)-mediated food allergies are reported to affect around 3.5% of children and 2.4% of adults, with symptoms varying in range and severity. While being the gold standard for diagnosis, oral food challenges are burdensome, and diagnostic tools based on specific IgE can be flawed. Furthering our understanding of the mechanisms behind food allergy onset, severity and persistence could help reveal immune profiles associated with the disease, to ultimately aid in diagnosis. Alterations to cytokine levels and immune cell ratios have been identified, though further research is needed to fully capture the heterogenous nature of food allergy. Moreover, the existence of such immune alterations also raises the question of potential wider systemic effects. For example, recent research has emphasised the existence and impact of neuro-immune interactions and implicated behavioural and neurological changes associated with food allergy. This review will provide an overview of such food allergy-driven neuro-immune interactions, with the aim of emphasising the importance of furthering our understanding of the immune mechanisms underlying IgE-mediated food allergy.
BACKGROUND:IgE-mediated food allergy (FA) is a global health concern with substantial individual and societal implications. While diverse intervention strategies have been researched, inconsistencies in reported outcomes limit evaluations of FA treatments. To streamline evaluations and promote consistent reporting, the Core Outcome Measures for Food Allergy (COMFA) initiative aimed to establish a Core Outcome Set (COS) for FA clinical trials and observational studies of interventions. METHODS:The project involved a review of published clinical trials, trial protocols and qualitative literature. Outcomes found as a result of review were categorized and classified, informing a two-round online-modified Delphi process followed by hybrid consensus meeting to finalize the COS. RESULTS:The literature review, taxonomy mapping and iterative discussions with diverse COMFA group yielded an initial list of 39 outcomes. The iterative online and in-person meetings reduced the list to 13 outcomes for voting in the formal Delphi process. One more outcome was added based on participant suggestions after the first Delphi round. A total of 778 participants from 52 countries participated, with 442 participating in both Delphi rounds. No outcome met a priori criteria for inclusion, and one was excluded as a result of the Delphi. Thirteen outcomes were brought to the hybrid consensus meeting as a result of Delphi and two outcomes, 'allergic symptoms' and 'quality of life' achieved consensus for inclusion as 'core' outcomes. CONCLUSION:In addition to the mandatory reporting of adverse events for FA clinical trials or observational studies of interventions, allergic symptoms and quality of life should be measured as core outcomes. Future work by COMFA will define how best to measure these core outcomes.
Wish-granting is a form of positive psychological intervention that seeks to promote child wellbeing by fulfilling a wish of their choice. This study aimed to explore families’ experiences of receiving wish-granting interventions to understand how wishes impact wellbeing. Fifty in-depth semi-structured interviews were carried out with 22 families (23 parents, 17 young people); seven charity volunteers; and five health professionals, recruited from the United Kingdom. Interviews were transcribed verbatim and analysed using a thematic framework approach. Findings suggest wishes improve wellbeing by increasing positive emotion; by broadening families’ horizons; by providing an alternative focus; and by fostering opportunities for togetherness. To grow and maintain impact, consideration should be given to developing strategies that increase anticipation; keep wish memories alive; encourage children to make wishes that stretch their perceived limitations; and facilitate families to share their experiences and ‘give back’ to the community.
This systematic review aimed to review the evidence for psychological support for children with food allergies and their families, identify effective psychological interventions, and highlight the support needs for this group. A systematic search was undertaken across six databases (up to October 2023). Articles were checked by three reviewers for inclusion. Study data were extracted, and quality was assessed using the Mixed Methods Appraisal Tool. A narrative synthesis was undertaken. A total of 11 papers were included (n = 838 participants). Intervention types were based on cognitive behavioral therapy (CBT; n = 7); psycho-education (n = 1); peer mentoring (n = 1); self-regulation theory (n = 1); and coping (n = 1). Two interventions were for children only, three were for children and parents and six for parents only. Cognitive behavioral therapy-based interventions with highly anxious parents or children or those facilitated by a psychologist showed significant improvements with moderate-to-large effect sizes. The one self-help CBT-based online program showed no effects. Other intervention types reported mainly trends in improvement due to small sample sizes. Most interventions were aimed at supporting children or parents in day-to-day management of food allergy, measuring outcomes such as quality of life, self-efficacy, anxiety, worry, and depression. One intervention was designed to assist with oral immunotherapy outcomes. The majority of the studies had small sample sizes and were feasibility or proof-of-concept studies. Available research evidence points to effectiveness of facilitated CBT-based interventions for those that have high food allergy-related anxiety, but as many studies have small sample sizes and few report effect sizes, no firm conclusions can yet be drawn. A stepped care approach is likely to be useful for this population. Research using large interventional designs, particularly for children and adolescents, are needed.
CONTEXT:Patient-reported experience measures (PREMs) provide important insights into the challenges experienced when living with a chronic condition. Although patient-reported outcome measures (PROMs) exist in audiology, there are no validated PREMs to help clinicians understand patient perspectives and identify areas where patients may need additional support or interventions. OBJECTIVE:The aim of this study was to develop and evaluate content for the new 'My Hearing PREM', which captures lived experiences of hearing loss from patients' perspectives. DESIGN:My Hearing PREM was developed and tested in two key phases. Phase 1 involved generating the PREM prototype in accordance with our conceptual model of the lived experience of hearing loss. In Phase 2, cognitive interviews were conducted with adults with hearing loss to appraise the content of the PREM (relevance, clarity, acceptability and comprehensiveness) and assess its respondent burden. Key stakeholders (e.g., adults with hearing loss, patient and public representatives, clinicians and researchers) were consulted throughout Phases 1 and 2 to review and refine the PREM. Interview data were analysed using thematic analysis. SETTING AND PARTICIPANTS:Sixteen participants (aged 16 years and over) with hearing loss took part in cognitive interviews, recruited from UK audiology departments and non-clinical settings (e.g., lip-reading classes, national charity links and social media). RESULTS:Most PREM items were found to be relevant, clear, acceptable and comprehensive. Several problems were identified, including items not working well with the response scale options, irrelevant questions and a lack of clarity about terms (e.g., healthcare professionals) and whether questions should be answered based on the use of hearing aids (or not). The PREM was amended accordingly. CONCLUSIONS:Currently, no hearing loss-specific PREMs exist in audiology. Involving multiple stakeholders in the development of the PREM helped to ensure that the items were relevant, clear, acceptable and comprehensive. The PREM is undergoing further evaluation and refinement in preparation for investigating the feasibility of implementing it into clinical practice. PATIENT OR PUBLIC CONTRIBUTION:Ongoing Patient and Public Involvement and Engagement (PPIE) with key groups (South Asian Women's groups, young people's groups, learning disability networks and student populations) was integral to the study. PPIE members reviewed patient information sheets and consent forms, advised on recruitment, reviewed the interview schedule and checked coding and analysis procedures. PPIE members provided feedback on the PREM's comprehensibility. Members of the public, including adults attending lip-reading classes and hearing aid users from the South Asian community, provided feedback on iterative PREM drafts.