Green, Yellow, and Red risk perception in everyday life - a communication tool

Background: Adolescents have the highest risk for food allergy-related fatalities. Our main aim was to investigate the level of risk in everyday social situations as perceived by adolescents/young adults with peanut allergy, their families, and their friends. Methods: The web-based ‘Colours Of Risks’ (COR) questionnaire was completed by 70 patients (aged 12–23 years), 103 mothers and fathers, 31 siblings (aged 12–26 years), and 42 friends (aged 12–24 years). COR deals with six main contexts (home, school/university, work, visiting/social activities, special occasions/parties, and vacations), each with 1-12 items. Response categories are green (I feel safe), yellow (I feel uncertain), or red (I feel everything is risky). Results: There was a high level of agreement between participants in defining situations as safe, uncertain, or risky, but female patients and mothers rated fewer situations as safe compared to male patients and fathers. Being with close friends and family, and attending planned parties without alcohol were perceived as situations of low risk. While 94% of patients took an epinephrine auto-injector (EAI) into risky situations, only 65% took it into safe situations. In contrast to the close family, 31% of the friends did not know the patient had an EAI, and fewer knew how to administer the EAI. Conclusion: Young adults with peanut allergy face challenges when moving from the safe home with ready assistance if needed, to independence with unpredictable surroundings and less certain help. Perceived ‘safe’ situations may in fact be the riskiest, as patients often do not take the EAI with them

Quality of life in childhood, adolescence and adult food allergy: patient and parent perspectives

Background: Studies of children with food allergy typically only include the mother and have not investigated the relationship between the amount of allergen needed to elicit a clinical reaction (threshold) and health-related quality of life (HRQL). Our aims were (i) to compare self-reported and parent-reported HRQL in different age groups, (ii) to evaluate the impact of severity of allergic reaction and threshold on HRQL, and (iii) to investigate factors associated with patient-reported and parent-reported HRQL. Methods: Age-appropriate Food Allergy Quality of Life Questionnaires (FAQLQ) were completed by 73 children, 49 adolescents and 29 adults with peanut, hazelnut or egg allergy. Parents (197 mothers, 120 fathers) assessed their child's HRQL using the FAQLQ-Parent form. Clinical data and threshold values were obtained from a hospital database. Significant factors for HRQL were investigated using univariate and multivariate regression. Results: Female patients reported greater impact of food allergy on HRQL than males did. Egg and hazelnut thresholds did not affect HRQL, but lower peanut threshold was associated with worse HRQL. Both parents scored their child's HRQL better than the child's own assessment, but whereas mother-reported HRQL was significantly affected by limitations in the child's social life, father-reported HRQL was affected by limitations in the family's social life. Severity of allergic reaction did not contribute significantly to HRQL. Conclusion: The risk of accidental allergen ingestion and limitations in social life are associated with worse HRQL. Fathers provide a unique perspective and should have a greater opportunity to contribute to food allergy research

A qualitative study in Ireland: Foster carers and practitioners perspectives on developing a trauma-informed care psychoeducation programme

This article presents the findings of a qualitative study of foster carersâ and multidisciplinary practitionersâ perceptions of foster carersâ needs and existing practices in foster care in Ireland. This study explored participantsâ perceptions of the development of a trauma-informed care (TIC) psychoeducational intervention for foster carers. From a purposive sample of foster carers and multidisciplinary practitioners, four focus groups were carried out. Thematic analysis revealed three themes: The Need for Trauma-informed Care, Development of Trauma-informed Care and Implementation of Trauma-informed Care. The findings have informed the development of a culturally sensitive TIC intervention for foster carers that reflect the needs and practices of the Irish foster care context

Towards a more comprehensive understanding of fostering connections: The trauma-informed foster care programme: a mixed methods approach with data integration

Foster carers require high-quality training to support them in caring for children with trauma-related difficulties. This paper describes a mixed methods approach that was applied to evaluate the complex intervention Fostering Connections: The Trauma-Informed Foster Care Programme, a recently developed trauma-informed psychoeducational intervention for foster carers in Ireland. A quantitative outcome evaluation and a qualitative process evaluation were integrated to capture a comprehensive understanding of the effects of this complex intervention. A convergent mixed methods model with data integration was used. Coding matrix methods were employed to integrate data. There was convergence among component studies for: programme acceptability, increased trauma-informed foster caring, improvement in child regulation and peer problems, and the need for ongoing support for foster carers. This research provides support for the intervention suggesting the importance of its implementation in Ireland. The integrative findings are discussed in relation to effects and future implementation

Trauma-informed care psychoeducational group-based interventions for foster carers and adoptive parents: A narrative review

Trauma-informed care (TIC) psychoeducational group-based interventions for foster carers and adoptive parents are growing, but evidence about their effects have not been integrated. A narrative review was undertaken of studies that evaluated the effects of these interventions. It found that they appear to increase carers' capacity to provide children with TIC and reduce child trauma-related difficulties. Three core components â psychoeducation, reflective engagement and skills building â were identified as helping to explain how the interventions work. However, the evidence is weak due to the mixed findings, diverse research designs, varied measures and methodological deficiencies, so results should be interpreted with caution. This highlights the urgent need for more rigorous research. Implications for practice, policy and research are discussed

The emperor has no symptoms: the risks of a blanket approach to using epinephrine autoinjectors for all allergic reactions

Fatal anaphylaxis in humans is rare and unpredictable. We note a trend to provide allergic individuals with care plans that recommend immediate use of epinephrine autoinjectors if allergen ingestion is suspected, even in the absence of any allergic symptoms, without any supporting evidence base. Instructions to use an autoinjector device, irrespective of reaction severity and especially when symptoms are actually absent, are likely to add to parental and patient anxiety. Of greater concern is the possibility of epinephrine being administered “too early” to treat initial, mild symptoms that then progress to severe anaphylaxis. It is not hard to visualize a scenario where one or both epinephrine autoinjectors have been deployed for mild symptoms, yet the reaction progresses to a severe reaction and no further epinephrine is available for administration. Epinephrine needs to be available as a rescue treatment for anaphylaxis, potentially buying valuable minutes while emergency medical services are activated to attend. Food-allergic individuals and their carers need to be provided with more constructive strategies and support than merely being told to “use your pen.

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

Peanut Allergen Threshold Study (PATS): Novel single-dose oral food challenge study to validate eliciting doses in children with peanut allergy

Background: Eliciting doses (EDs) of allergenic foods can be defined by the distribution of threshold doses for subjects within a specific population. The ED05 is the dose that elicits a reaction in 5% of allergic subjects. The predicted ED05 for peanut is 1.5 mg of peanut protein (6 mg of whole peanut). Objective: We sought to validate the predicted peanut ED05 (1.5 mg) with a novel single-dose challenge. Methods: Consecutive eligible children with peanut allergy in 3 centers were prospectively invited to participate, irrespective of previous reaction severity. Predetermined criteria for objective reactions were used to identify ED05 single-dose reactors. Results: Five hundred eighteen children (mean age, 6.8 years) were eligible. No significant demographic or clinical differences were identified between 381 (74%) participants and 137 (26%) nonparticipants or between subjects recruited at each center. Three hundred seventy-eight children (206 male) completed the study. Almost half the group reported ignoring precautionary allergen labeling. Two hundred forty-five (65%) children experienced no reaction to the single dose of peanut. Sixty-seven (18%) children reported a subjective reaction without objective findings. Fifty-eight (15%) children experienced signs of a mild and transient nature that did not meet the predetermined criteria. Only 8 (2.1%; 95% CI, 0.6%-3.4%) subjects met the predetermined criteria for an objective and likely related event. No child experienced more than a mild reaction, 4 of the 8 received oral antihistamines only, and none received epinephrine. Food allergy–related quality of life improved from baseline to 1 month after challenge regardless of outcome (η2 = 0.2, P < .0001). Peanut skin prick test responses and peanut- and Ara h 2–specific IgE levels were not associated with objective reactivity to peanut ED05. Conclusion: A single administration of 1.5 mg of peanut protein elicited objective reactions in fewer than the predicted 5% of patients with peanut allergy. The novel single-dose oral food challenge appears clinically safe and patient acceptable, regardless of the outcome. It identifies the most highly dose-sensitive population with food allergy not otherwise identifiable by using routinely available peanut skin prick test responses or specific IgE levels, but this single-dose approach has not yet been validated for risk assessment of individual patients

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