Global availability and uptake of psychological services for adults, caregivers and children with food allergy.

BACKGROUND: Food allergy (FA) is associated with poor health-related quality of life and high levels of psychological distress. Psychological support is extremely important but not always available. As part of the Global Access to Psychological Services for Food Allergy (GAPS) study, we aimed to assess psychological distress and service use among adults, caregivers and children with FA in a global survey. METHODS: Participants (n = 1329 adults with FA; n = 1907 caregivers of children with FA) from >20 countries were recruited through patient organisations, social media advertisements and online survey panels to complete an online survey. Surveys were available in six languages. RESULTS: A total of 67.7% of adults and 77.2% of caregivers reported direct experience, and 51.6% of caregivers said their child had experienced FA-related psychological distress. The most commonly reported issue was anxiety about having an allergic reaction. Less than 20% had been assessed for FA-related psychological 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 < .001). The United Kingdom, Australia and Brazil had the highest number of participants reporting distress. The most commonly reported barrier to seeing a mental health professional was cost. CONCLUSIONS: FA-related distress is common across countries, but with substantial country-to-country variability. Allergy providers are encouraged to routinely assess families for psychological distress and provide access to appropriate mental health resources. Development and implementation of evidence-based, patient-informed accessible, affordable FA interventions in multiple languages is urgently needed.

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 randomized control 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 specialized 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.

Parental confidence in managing food allergy: development and validation of the Food Allergy Self-Efficacy Scale for Parents (FASE-P).

BACKGROUND: Food allergy is often a life-long condition that requires constant vigilance to prevent accidental exposure and avoid potentially life-threatening symptoms. Parents' confidence in managing their child's food allergy may relate to the poor quality of life anxiety and worry reported by parents of food-allergic children. OBJECTIVE: The aim of this study was to develop and validate the first scale to measure parental confidence (self-efficacy) in managing food allergy in their child. METHODS: The Food Allergy Self-Efficacy Scale for Parents (FASE-P) was developed through interviews with 53 parents, consultation of the literature and experts in the area. The FASE-P was then completed by 434 parents of food-allergic children from a general population sample in addition to the General Self-Efficacy Scale (GSES), the Food Allergy Quality of Life Parental Burden Scale (FAQL-PB), the General Health Questionnaire-12 (GHQ-12) and the Food Allergy Impact Measure (FAIM). A total of 250 parents completed the retest of the FASE-P. RESULTS: Factor and reliability analysis resulted in a 21-item scale with five subscales. The overall scale and subscales have good to excellent internal consistency (Cronbach's α of 0.63-0.89), and the scale is stable over time. There were low to moderate significant correlations with the GSES, FAIM and GHQ-12 and strong correlations with the FAQL-PB, with better parental confidence relating to better general self-efficacy, better quality of life and better mental health in the parent. Poorer self-efficacy was related to egg and milk allergy; self-efficacy was not related to severity of allergy. CONCLUSIONS AND CLINICAL RELEVANCE: The FASE-P is a reliable and valid scale for use with parents from a general population. Its application within clinical settings could aid provision of advice and improve targeted interventions by identifying areas where parents have less confidence in managing their child's food allergy.

The psychological impact of diagnostic food challenges to confirm the resolution of peanut or tree nut allergy.

BACKGROUND: Twenty percent of children outgrow peanut allergy and 10% outgrow tree nut allergy. Resolution can be confirmed by a food challenge. Little is known about the psychosocial impact of the challenge. We aimed to investigate effects of a food challenge on anxiety, stress and quality of life (QoL) in children and their mothers on the day of a food challenge to peanuts or nuts, and in the months following the challenge. METHODS: One hundred and three families participated. Forty children undergoing food challenges to access resolution of allergy, and their mothers, completed validated questionnaires to measure generic and food specific quality of life, stress and anxiety prior to challenge, on the day of investigation and 3-6 months later. Sixty-three children with no clinical indication to challenge (i.e. in the opinion of the allergist had persistent allergy) acted as comparison group completing questionnaires 3-6 months apart. RESULTS: Mothers reported raised anxiety on the day of challenge (P = 0.007), but children were less anxious. The children (P = 0.01) and mothers (P = 0.01) had improved food-related, but not general, QoL 3-6 months following challenge. Children reported lower anxiety levels following the challenge (P = 0.02), but anxiety remained unchanged in mothers. The improvements in maternal and children's QoL and anxiety levels were irrespective of the challenge outcome and despite co-existing food allergies in 50% of children. CONCLUSIONS: Mothers experienced increased anxiety on the day of food challenge, unlike the children, perhaps reflecting the differences in their perceived risks. Food challenges are associated with improved food-related QoL in the following months even in those with a positive challenge.

Adolescent-parent disagreement on health-related quality of life of food-allergic adolescents: who makes the difference?

BACKGROUND: Food-allergic adolescents are at highest risk for food allergy fatalities, which may be partly due to compromised self-management behavior. Such behavior may be negatively influenced by conflictual situations caused by adolescent-parent disagreement on the adolescent's health-related quality of life (HRQL). Comparisons of adolescent-self-reported and parent-proxy-reported HRQL of food-allergic adolescents have never extensively been studied. The aims of this study were to investigate disagreement in adolescent-self-reports and parent-proxy-reports on the HRQL of food-allergic adolescents and to investigate the factors influencing adolescent-parent disagreement. METHODS: Teenager Form (TF) and Parent Form (PFA) of the Food Allergy Quality of Life Questionnaire (FAQLQ), Food Allergy Independent Measure (FAIM), and Brief-Illness Perception Questionnaire (Brief-IPQ) were sent to food-allergic Dutch adolescents (13-17 years) and their parents. ICCs, t-tests, and Bland-Altman plots were used to investigate adolescent-parent disagreement. Participant characteristics, illness expectations, and illness perceptions influencing adolescent-parent disagreement were studied using regression analysis. RESULTS: Seventy adolescent-parent pairs were included. There were a moderate correlation (ICC = 0.61, P < 0.001) and no significant difference (3.78 vs 3.56, P = 0.103) between adolescent-self-reported and parent-proxy-reported HRQL at group level. However, Bland-Altman plots showed relevant differences (exceeding the minimal important difference) for 63% of all adolescent-parent pairs. Adolescent's age (> 15 years), poorer adolescent-reported illness comprehension (Brief-IPQ-TF, coherence), and higher adolescent-reported perceived disease severity (Food Allergy Independent Measure-Teenager Form & -Parent Form) were associated with adolescent-parent disagreement. CONCLUSIONS: Adolescent-parent disagreement on the adolescent's HRQL was mainly associated with adolescents' rather than parents' perceptions and characteristics. Illness comprehension of the adolescent may be an important target for intervention aimed at reducing adolescent-parent disagreement.

The psychosocial impact of food allergy and food hypersensitivity in children, adolescents and their families: a review.

Food allergy affects 6% of children but there is no cure, and strict avoidance of index allergens along with immediate access to rescue medication is the current best management. With specialist care, morbidity from food allergy in children is generally low, and mortality is very rare. However, there is strong evidence that food allergy and food hypersensitivity has an impact on psychological distress and on the quality of life (QoL) of children and adolescents, as well as their families. Until recently, the measurement of QoL in allergic children has proved difficult because of the lack of investigative tools available. New instruments for assessing QoL in food allergic children have recently been developed and validated, which should provide further insights into the problems these children encounter and will enable us to measure the effects of interventions in patients. This review examines the published impact of food allergy on affected children, adolescents and their families. It considers influences such as gender, age, disease severity, co-existing allergies and external influences, and examines how these may impact on allergy-related QoL and psychological distress including anxiety and depression. Implications of the impact are considered alongside avenues for future research.

Impact of peanut allergy on quality of life, stress and anxiety in the family.

BACKGROUND: Peanut allergy (PA) is known to impact on quality of life (QoL) of the sufferer, but little research has focused on all family members. We therefore sought to establish the impact of PA on QoL and reported anxiety of children with clinically confirmed PA, their parents and older siblings. METHODS: Forty-six families, who had a child with PA, completed QoL (PedsQL or WHOQOL-BREF), anxiety (SCAS or STAI) and perceived stress (PSS) scales. PA children completed a PA specific QoL questionnaire (Pediatr Allergy Immunol 2003;14:378). Parents and sibling also completed QoL proxy questionnaires for the PA child (PedsQL, Pediatr Allergy Immunol 2003;14:378). RESULTS: Mothers rated their own psychological (P < 0.01) and physical (P < 0.05) QoL significantly worse than fathers rated theirs, and had higher scores than fathers for anxiety (P < 0.05) and stress (P < 0.001). Children with PA had significantly poorer physical health-related QoL (P < 0.05), QoL within school (P < 0.01) and general QoL (P < 0.05) than their siblings did, and greater separation anxiety (P < 0.05). The majority of differences were between girls with PA and female siblings. Mothers felt that there was a greater impact on QoL for their PA child, compared with that reported by siblings, fathers or the PA children themselves (P < 0.01). CONCLUSIONS: Mothers report that they have significantly poorer QoL and suffer more anxiety and stress than fathers do; this inter-parental difference may be an important feature of family stress caused by PA. Siblings have a similar view of how QoL affects the PA child as the PA child does, while mothers may possibly overestimate this impact.

Can illness perceptions and coping predict psychological distress amongst allergy sufferers?

OBJECTIVE: The aim of the present study was to measure the extent to which illness perceptions and coping strategies are associated with the levels of psychological distress amongst allergy sufferers. DESIGN AND METHOD: One hundred and fifty-six allergy sufferers (all members of Allergy U.K.) completed a postal survey consisting of the Revised Illness Perception Questionnaire (IPQ-R) and the COPE. Psychological distress was measured using the General Health Questionnaire (GHQ-28) and the Perceived Stress Scale (PSS). RESULTS: Multiple regression analyses indicated that illness perceptions explained between 6 and 26% of variance on measures of psychological distress; coping strategies explained between 12 and 25%. A strong illness identity and emotional representations of the allergy were associated with higher levels of psychological distress; as were less adaptive coping strategies such as focusing on and venting of emotions. Strong personal control beliefs were associated with the lower levels of distress, as were adaptive coping strategies such as positive reinterpretation and growth. Coping partially mediated the link between the illness perceptions and the outcome; however, illness identity, emotional representations and personal control retained an independent significant association with psychological distress. CONCLUSION: The findings support a role for illness perceptions and coping in explaining levels of psychological distress amongst allergy sufferers. This has implications for targeted health interventions aimed at reducing the strength of illness identity and emotional representations and increasing a sense of control and the use of more adaptive coping strategies.

Psychological characteristics of people with perceived food intolerance in a community sample.

In most adults who believe themselves to be food intolerant there is no objective supporting evidence. It has therefore been proposed that the misperception of intolerance to food is linked to psychiatric illness or personality disorder. This hypothesis was tested in a community-derived sample of individuals who attributed an adverse symptom to a type of food. A random mailing recruited 955 participants aged > or =18 years, of whom 232 perceived themselves to be food intolerant (PFI). All recruits were sent two questionnaires, the General Health Questionnaire-28 (GHQ-28) and the shortened version of the Eysenck Personality Questionnaire (EPQ-R). A total of 535 GHQ-28 and 518 EPQ-R forms were returned that were correctly completed, an overall response rate of 55%. For the subscales of the EPQ-R, neuroticism was greater in those with a PFI than those without. Women with a PFI were more extroverted than control women. For the GHQ-28 subscales, women with a PFI had significantly higher scores than control women on somatic symptoms, anxiety, insomnia, and severe depression. There was a greater percentage of psychiatric caseness among women with a PFI than among men with a PFI or control women. Nevertheless, this percentage was no greater than that reported among a reference sample derived from NHS and university staff. It is concluded that perceived food intolerance is associated with psychological distress in women with a PFI, and neurotic symptoms in both men and women with a PFI, but there is no greater prevalence of psychiatric disorder among women or men with a PFI than there is in some professional groups.

Incorporating a gender dimension in food allergy research: a review.

Sex and gender are the major determinants of health and disease in both men and women. The aim of this review paper was to examine differences in gender and sex in relation to the prevalence and effects of food allergy. There are still major gaps in our knowledge about the kinds of processes which shape men's and women's perceptions and experiences of food allergy. The expression and experience of health and illness may be moderated by variables such as biological vulnerability, exposure to health risks, perception of symptoms, evaluation of risk, information processing and role expectations. This review highlights the complex links between biological sex, gender, and health in general and offers a synthesis of how these may interact to produce sex and gender differences in biopsychosocial manifestations of food allergy. Implications for research and public health practice are discussed.

No unique role for nausea attributed to eating a food in the recalled acquisition of sensory aversion for that food.

Currently in the U.K., as in the U.S.A. 20 years ago, when students were asked to name a food that they did not like, more dislike for the food was attributed to nausea or vomiting after eating than to other gastrointestinal symptoms or to illness in other parts of the body. However, when members of the public first identified adverse symptoms and then attributed them to foods, and dislike for the food was first enquired about on a later occasion, there was no evidence for a unique role for a causal association with nausea in the human acquisition of food aversions. Furthermore, fear of the symptom was more prevalent than acquired sensory aversion when there was more precise recall of memories of the food being followed by nausea or vomiting and greater likelihood of there having been causal contingency rather than mere coincidence. Therefore, the more frequent invocation of nausea than of some other symptoms as the cause of a sensory aversion to a food may result from personal theory of the body, rather than from a veridically recalled occasion when nausea was contingent on eating the food---an event that must occur for aversion to arise from associative conditioning.