Why do people mis-diagnose themselves with food hypersensitivity? An exploration of the role of biopsychosocial factors

Up to 35% of people self-diagnose food allergy or intolerance (food hypersensitivity [FH]), or diagnose it in their child, and self-manage the condition rather than seek a clinical diagnosis. This is much higher than the latest FH prevalence rate, estimated to affect 2–5% of the general population. The actual prevalence rate may be underestimated due to the lack of diagnostic services; however, this can only account for a small proportion of the discrepancy because only a small percentage of self-reported FH can be clinically confirmed. Many people are therefore misdiagnosing their or their child’s symptoms as FH and needlessly removing foods from their or their child’s diet. There are a number of possible reasons for this misdiagnosis, which can be considered from a biopsychosocial perspective. Psychological factors include a confusion over the diagnosis, coincidental pairing of food and symptom, psychological or psychosomatic reactions, and taste aversions. There are also biological mechanisms that have not been fully considered in food allergy research that may be relevant, such as conditioning of the immune system or stress responses. A social context pertains to a greater awareness of FH due to media coverage and changes in food labelling laws. Any of these theories are plausible, but the research to date has a number of methodological issues. Most studies report on small self-selected samples recruited from clinics and there is a lack of general population data. Studies also tend to be cross-sectional, which does not allow cause and effect to be established. Future research needs to include longitudinal designs that incorporate qualitative elements to enable a detailed exploration of reasons why people self and misdiagnose FH

The Role of Outcome and Experience in Hypothesis Testing about Food Allergy

It is important to understand the reasoning strategies that health behaviours are based on. Croker and Buchanan (2011b) found that the strategies people use when choosing how to test a hypothesis about oral health are affected by whether the participant is seeking to reproduce a positive outcome (i.e., good health) or eliminate an unwanted outcome (i.e., bad health). The aim of this study was to investigate the effect of outcome on reasoning strategies in a food allergy context. Participants with and without food allergy were given hypothesistesting tasks and asked to choose which of three alternative patterns of food consumption could be used to test a hypothesis that a person is allergic to a particular food. Participants were more likely to select a controlled test of the hypothesis that a specific food causes an allergic reaction when a reaction to a food had been observed after eating, than when a reaction had not been observed due to food avoidance. Although the potential severity of making an incorrect choice in a food allergy context is both greater and more proximal than in an oral health context, the same bias in reasoning strategy was found. Logically appropriate hypothesis-testing behaviour may not, therefore, underpin real-world decision making

A preliminary investigation of 4 to 11-year-old children's knowledge and understanding of stress

Objective. To examine children's knowledge, understanding and experience of stress from 4 to 11 years of age across four age groups (4–5, 6–7, 8–9, and 10–11 years old). Methods. A semi-structured interview format was used to elicit information from 50 children about their understanding and experience of stress. Results. Most children were able to define stress, with older children providing more complex responses. Many children had indirect and/or personal experience of stress. Younger children were more likely than older children to report that there was nothing people could do to stop stress; children reported using both adaptive and maladaptive coping strategies to deal with stress. Conclusion. Some young children have a basic understanding of stress and many have experience of stress; both understanding and experience develop with age. Practice Implications. The research has potential implications for provider-patient communication, particularly within preventative health education and clinically within the field of childhood post-traumatic stress disorder (PTSD)

Exploring quality of life in families of children living with and without a severe food allergy

This study aimed to explore the impact of food allergy on quality of life in children with food allergy and their primary caregivers, compared to a healthy non-food allergy comparison group. Food allergy children (n = 34) and control children (n = 15), aged 8–12, and their respective primary caregivers (n = 30/n = 13), completed generic quality of life scales (PedsQL™ and WHOQOLBREF) and were asked to take photographs and keep a diary about factors that they believed enhanced and/or limited their quality of life, over a one-week period. Questionnaire analysis showed that parents of children with food allergy had significantly lower quality of life in the social relationships domain and lower overall quality of life than the comparison parents. In contrast, children with food allergy had similar or higher quality of life scores compared to comparison children. Content analysis of photograph and diary data identified ten themes that influenced both child and parental quality of life. It was concluded that although food allergy influenced quality of life for some children, their parent's quality of life was hindered to a greater extent. The variability in findings highlights the importance of assessing quality of life in individual families, considering both children with allergies and their primary caregivers

Quality of life, stress and mental health in parents of children with parentally diagnosed food allergy compared to medically diagnosed and healthy controls

Background. Food allergy is related to poorer quality of life (QoL) and mental health of caregivers. Many parents diagnose food allergy in their child without seeking medical care and there is limited research on this group. This study investigated parental QoL and mental health in parents of children with parent-diagnosed food allergy (PA), medically diagnosed food allergy (MA), and a control group with no allergy (NA). Methods. One hundred and fifty parents from a general population completed validated measures of QoL, anxiety, depression, and stress. Results. Parents of children with food allergy (PA or MA) reported higher stress, anxiety, and depression than the control group (all ). Parents of children with MA reported poorer food allergy related QoL compared to parents of children with PA (); parents of children with PA reported poorer general QoL compared to parents of children with MA (). Conclusion. Parents of children with food allergy have significantly poorer mental health compared to healthy controls, irrespective of whether food allergy is medically diagnosed or not. It is important to encourage parents to have their child medically tested for food allergy and to recognise and refer for psychological support where needed

Parental self-efficacy in managing food allergy and mental health predicts food allergy related quality of life

BACKGROUND: Food allergy has been shown to have a significant impact on quality of life (QoL) and can be difficult to manage in order to avoid potentially life threatening reactions. Parental self-efficacy (confidence) in managing food allergy for their child might explain variations in QoL. This study aimed to examine whether self-efficacy in parents of food allergic children was a good predictor of QoL of the family. METHODS: Parents of children with clinically diagnosed food allergy completed the Food Allergy Self-Efficacy Scale for Parents (FASE-P), the Food Allergy Quality of Life Parental Burden Scale (FAQL-PB), the GHQ-12 (to measure mental health) and the Food Allergy Independent Measure (FAIM), which measures perceived likelihood of a severe allergic reaction. RESULTS: A total of 434 parents took part. Greater parental QoL was significantly related to greater self-efficacy for food allergy management, better mental health, lower perceived likelihood of a severe reaction, older age in parent and child and fewer number of allergies (all p<0.05). Food allergy self-efficacy explained more of the variance in QoL than any other variable and self-efficacy related to management of social activities and precaution and prevention of an allergic reaction appeared to be the most important aspects. CONCLUSIONS: Parental self-efficacy in management of a child's food allergy is important and is associated with better parental QoL. It would be useful to measure self-efficacy at visits to allergy clinic in order to focus support; interventions to improve self-efficacy in parents of food allergic children should be explored. This article is protected by copyright. All rights reserved

Preliminary development of proxy-rated quality-of-life scales for children and adults with Niemann-Pick type C

OBJECTIVES: Niemann-Pick disease type C (NPC) is a rare life-limiting disease for which there is no cure. No scales currently exist to measure the impact of medication, physical therapy or clinical trials. The aim of this study was to develop age-appropriate Quality-of-Life (QoL) scales to measure the impact of NPC on children and adults. DESIGN: Scale development study using a phenomenological approach to data generation and analysis. METHODS: Fourteen interviews were conducted with people living with NPC and/or their parents/carers. Themes were generated and examined against an existential-phenomenological theory of wellbeing. A matrix was constructed to represent the phenomenological insight gained on participants' subjective experiences and a bank of items that were related to their QoL was developed. RESULTS: NPC quality-of-life questionnaires for children (NPCQLQ-C) and adults (NPCQLQ-A) proxy prototype scales were produced and completed by 23 parents/carers of children (child age mean = 8.61 years) and 20 parents/carers of adults (adult age = 33.4 years). Reliability analysis resulted in a 15-item NPCQLQ-C and a 30-item NPCQLQ-A, which showed excellent internal consistency, Cronbach's α = 0.925 and 0.947, respectively. CONCLUSION: The NPCQLQ-C and NPCQLQ-A are the first disease-specific QoL scales to be developed for people living with NPC. This novel approach to scale development values the experiential, real life impact of living with NPC and focused on the lived-experiences and impact on QoL. The scales will enable healthcare professionals and researchers to have a better understanding and quantifiable measurement of the impact of living with NPC on a patient's daily life

Is there a role for telemedicine in adult allergy services?

Telemedicine refers to the application of telecommunication and information technology (IT) in the delivery of health and clinical care at a distance or remotely and can be broadly considered in two modalities: store-and-forward and real-time interactive services. Preliminary studies have shown promising results in radiology, dermatology, intensive care, diabetes, rheumatology and primary care. However, the evidence is limited and hampered by small sample sizes, paucity of randomised controlled studies and lack of data relating to cost-effectiveness, health related quality of life and patient and clinician satisfaction. This review appraises the evidence from studies that have employed telemedicine tools in other disciplines and makes suggestions for its potential applications in specific clinical scenarios in adult allergy services. Possible examples include: triaging patients to determine the need for allergy tests; pre-assessment for specialised treatments such as allergen immunotherapy; follow up to assess treatment response and side effects; and education in self-management plan including training updates for self-injectable adrenaline and nasal spray use. This approach might improve access for those with limited mobility or living far away from regional centres, as well as bringing convenience and cost savings for the patient and service provider. These potential benefits need to be carefully weighed against evidence of service safety and quality. Keys to success include delineation of appropriate clinical scenarios, patient selection, training, IT support and robust information governance framework. Well-designed prospective studies are needed to evaluate its role. This article is protected by copyright. All rights reserved