Living with severe allergy: an Anaphylaxis Campaign national survey of young people

Abstract

BackgroundThe transition to adulthood can be particularly challenging for young people with severe allergies, who must learn to balance personal safety with independent living. Information and support for young people and their families are crucial to successfully managing this transition. We sought to: gather insights into the impact of severe allergies on the lives of young people; explore where young people go for information about anaphylaxis and what information they want and need; identify areas where further support is needed.MethodsAn online questionnaire survey of young people aged 15–25 years with severe allergies in the United Kingdom (UK) was conducted on behalf of the Anaphylaxis Campaign, the main patient support organisation. Participants were recruited mainly from the Anaphylaxis Campaign membership database and also via allergy clinics and social media. The study was funded by the Anaphylaxis Campaign’s In Memoriam Fund.ResultsA total of 520 young people responded to the survey. The majority had lived with severe allergies since they were young children; 59% reported having attended Accident and Emergency units as a consequence of their allergies. Only 66% of respondents reported always carrying their epinephrine auto-injectors; only 23% had ever used these. Few were currently receiving specialist allergy care; younger respondents were more likely to be under specialist care (34%) than those 18 years and above (23%). Respondents wanted more information about eating out (56%), travelling (54%) and food labelling (43%). Almost a quarter of respondents (23%) reported needing more information on managing their allergies independently without parental help. Managing allergies in the context of social relationships was a concern for 22% of respondents.ConclusionsThis survey has identified the information and support needs and gaps in service provision for young people with severe allergies. Healthcare professionals and patient support organisations, with the support of the food industry, can help to meet these needs.

Prevalence of common food allergies in Europe: a systematic review and meta-analysis

“…increasing hospital utilization, increasing associated medical costs, and increasing burden of care on immediate families (1)(2)(3)(4)(5)(6)(7)(8), reliable estimates of their prevalence in Europe are lacking.…”

Safety of Adrenaline Use in Anaphylaxis: A Multicentre Register

“…As a result, there is a need for training in when and how to use adrenaline in general, and more specifically autoinjectors, among patients, practitioners, and pharmacists [21,22,23,24,25,26]. The use of autoinjectors may be preferred for emergency use by health care professionals in some instances [27].…”

Anaphylaxis in adolescents

“…Disproportionately, the morbidity and fatality from anaphylaxis are greater in adolescents than in the other age groups [9][10][11][12][13][14][15][16][17]. Adolescence represents a time of great transition in the life of the young person, with rapid occurrence of physical, cognitive, psychological and social developments [10,11,13,16,17]. There is therefore an unavoidable shift from dependence to independence, as a transfer of responsibility takes place from parents to the young person [10,11,13,16,17].…”

“…Adolescence represents a time of great transition in the life of the young person, with rapid occurrence of physical, cognitive, psychological and social developments [10,11,13,16,17]. There is therefore an unavoidable shift from dependence to independence, as a transfer of responsibility takes place from parents to the young person [10,11,13,16,17]. Socialization increases, with an increasing influence from peers, which sometimes can be negative, resulting in impaired decision-making and risk-taking.…”

“…Although from a public health perspective, anaphylaxis remains an uncommon cause of death, given the increasing disease burden, healthcare utilization and the fact that potentially avoidable deaths often occur in young people, the development of strategies for prevention of recurrence, management and avoidance of fatalities has emerged as a priority area for health systems in many parts of the world [1-3,4 && ]. Disproportionately, the morbidity and fatality from anaphylaxis are greater in adolescents than in the other age groups [9][10][11][12][13][14][15][16][17]. Adolescence represents a time of great transition in the life of the young person, with rapid occurrence of physical, cognitive, psychological and social developments [10,11,13,16,17].…”