School of Applied Psychology and Department of Paediatrics and Child Health, University College Cork, Cork, Ireland.
Paediatrics and Child Infectious Diseases, First Moscow State Medical University, Moscow, Russia.
Allergy. 2020 Nov;75(11):2899-2908. doi: 10.1111/all.14363. Epub 2020 Jul 9.
Peanut allergy (PA) is a common, potentially life-threatening and typically lifelong condition with a significant burden of illness. However, information is lacking on how persons with PA (PwPA) and their caregivers perceive the psychosocial impact of living with PA. The Allergy to Peanuts imPacting Emotions And Life 1 (APPEAL-1) survey, conducted across Europe, investigated the experience and impact of living with PA. Here, we report data evaluating the psychosocial impact of PA on PwPA and their caregivers.
Allergy to Peanuts imPacting Emotions And Life study 1 was an online survey conducted in eight European countries. Representatives of eight patient advocacy groups and five healthcare-research specialists developed the survey. Eligible respondent groups included the following: adults diagnosed with PA (self-report); parent/nonparent caregivers (proxy-report for a child with PA); and parent/nonparent caregivers (self-report of PA impact on themselves).
Of 1846 total study respondents, 419 were adults with PA (self-report); 546 were parents/caregivers (proxy-report); and 881 were parents/caregivers (self-report). Most respondents reported lifestyle restrictions regarding food (84%-93%) and additional domains including parties and socializing, holiday activities and destinations, and taking public transport (53%-89%). Approximately 40% rated themselves as "very" frustrated and "very" stressed. Two-thirds (65%) felt socially isolated; 43% were bullied. Less than half felt confident in knowing when to use an adrenaline autoinjector. Several intercountry differences were observed such as high levels of uncertainty and stress in respondents from Ireland, highest rates of anxiety in respondents from Germany, and social exclusion and isolation most common in respondents from France.
Peanut allergy imposes an adverse psychosocial impact on patients and caregivers, leading to frustration, stress and isolation. Attention to the impact of PA is needed in research and clinical practice to improve PA healthcare and public education programmes.
花生过敏（PA）是一种常见的、潜在危及生命的疾病，通常是终身性的，且疾病负担较大。然而，关于 PA 患者（PwPA）及其照护者如何感知与 PA 共存的心理社会影响的信息尚缺乏。跨越欧洲进行的“花生过敏对情绪和生活的影响 1（APPEAL-1）”调查研究了 PA 患者的患病体验和影响。在此，我们报告评估 PA 对 PwPA 及其照护者心理社会影响的数据。
“花生过敏对情绪和生活的影响 1（APPEAL-1）”研究 1 是在欧洲八个国家开展的一项在线调查。八个患者权益团体代表和五名医疗保健研究专家共同开发了该调查。合格的应答者群体包括以下几类：经诊断患有 PA（自我报告）的成年人；PA 患儿的父母/非父母照护者（患儿的代理报告）；以及 PA 对自身影响的父母/非父母照护者（自我报告）。
在 1846 名研究应答者中，419 名为经诊断患有 PA 的成年人（自我报告）；546 名为父母/照护者（代理报告）；881 名为父母/照护者（自我报告）。大多数应答者报告在食物（84%-93%）和其他领域，如聚会和社交、度假活动和目的地以及乘坐公共交通工具（53%-89%）方面存在生活方式限制。约 40%的应答者自我评估为“非常”沮丧和“非常”有压力。三分之二（65%）的应答者感到社交孤立；43%的应答者曾被欺凌。不到一半的应答者有信心知道何时使用肾上腺素自动注射器。在爱尔兰应答者中观察到较高的不确定性和压力水平、在德国应答者中观察到较高的焦虑率以及在法国应答者中观察到最常见的社会排斥和孤立等若干国家间差异。
花生过敏对患者和照护者造成不良的心理社会影响，导致挫败感、压力和孤立。在研究和临床实践中需要关注 PA 的影响，以改善 PA 医疗保健和公共教育计划。
