Challenges for transition from paediatric to adult services for young people with allergic conditions in the United Kingdom

The tough thing about adulthood is it starts before you even know it starts (Robert Redford) It is estimated that up to a quarter of children and young people live with a long-term health condition (defined as lasting 12 months or more) in resource-rich countries such as the UK. They experience higher morbidity, admission rates and psychosocial consequences.1 Allergy and asthma in particular are on the rise in 11- to 25-year-olds, and this age group has a high risk of fatal anaphylaxis.2 Allergic multi-morbidity, although not new, is being increasingly studied in terms of prevalence and underlying pathophysiology. A recent study showed multi-morbidity in 43% of children and adolescents with eczema, including psychosocial disorders, with increasing risk of multi-morbidity as children approached the age of 17 years.3 An increasing number of allergic conditions have been shown to be associated with higher healthcare usage in the UK.4 It is therefore clear that we need to consider the healthcare needs of young people with allergy as they move from paediatric to adult services. In this editorial, we consider the challenges faced by adolescents and young adults (AYA) as they move from paediatric to adult allergy care and what information and support are available to help UK allergy services provide health care as AYA make this transition. Transition has been defined as an “active and evolving process that addresses the medical, psychosocial and educational needs of young people as they prepare to move from child- to adult-centred health care”.5 However, there is a notable lack of discussion and published work around transition for AYA with allergy, who are largely faced with changing from a fairly holistic paediatric setting to organ-based adult care (eg allergy, dermatology, respiratory). In UK practice, the majority of paediatric care providers will, at the age of 16 years, either discharge patients or transfer care to adult services. This occurs at a time of significant change and pressure related to education and examinations and/or leaving school for the workplace or higher education. The move from paediatric to adult services and the developmental move from being a child to being an adult involves an increase in independence, a reduction in parental support and involves the young person being more in control of their own actions and therefore their own health. To do this, they need advice, guidance and training relevant to them and their developmental stage. Knowledge, skills and confidence (self-efficacy) are all needed to become independent, competent and eventually an expert in their own condition management. Not all young people will need to go to adult services, so transition can also be about helping them transition to “being an adult” rather than transitioning to adult services. To assess the challenges faced by AYA with asthma and allergies and how we can help them manage their allergies when transitioning from paediatric to adult services, a European Asthma Allergy and Clinical Immunology (EAACI) Taskforce was set up. The Allergic Diseases in Adolescents and Young People Taskforce are multi-disciplinary with members from primary, secondary and tertiary care, including nurses, clinicians and psychologists. The Taskforce has conducted two systematic reviews to assess current knowledge regarding the challenges faced by AYA with asthma and allergies6 and interventions that have been undertaken to help improve psychosocial outcomes for AYA with asthma and allergy.7 The work shows that key challenges for AYA with asthma and allergy includes maintaining good health-related quality of life and psychological health, adhering to medication, the self-management of their condition and having supportive relationships.6 Interventions (randomized controlled trials or case-control studies) to help AYA with these conditions have only been published for those with asthma.7 Furthermore, these tend to be pilot or feasibility studies with small sample sizes, although peer-supported interventions do look promising for improving QoL for AYA.7 The Taskforce has also conducted a Europe-wide survey with healthcare professionals to assess challenges of working with AYA and their current transition practices. With over 1000 responses from 41 countries, the survey revealed that awareness and in particular resources for transition processes for AYA were badly lacking.8 On the basis of this work, the Taskforce has published EAACI guidelines for the effective transition of AYA with asthma and allergic conditions,9 which add some condition-specific elements to already published generic transition documents such as the NICE guidelines (https://www.nice.org.uk/guidance/ng43, last accessed 7 September 2020). The EAACI guideline recommendations were reviewed and seconded by over 1000 AYA and parents in Europe (paper in preparation) and include general and allergy-specific guidance. General healthcare transition guidance outlined by the Taskforce includes taking a multi-disciplinary approach, starting transition early (around age 11-13 years depending on when the young person is developmentally ready), ensuring the AYA has a full understanding of their condition, ensuring the AYA has access to resources and understand how to adhere to their management plan. More specific asthma and allergy guidance focuses on what we know about the challenges AYA with asthma and allergies face and what type of interventions have proved successful. The EAACI guideline discusses the importance of identifying and managing psychological and socio-economic issues to help AYA transition to taking control of their own condition management. Enrolling the family and encouraging AYA to tell their friends about their allergies can also be crucial in helping them successfully manage while maintaining a good quality of life.9 It is clear from the work conducted thus far that effective transition is extremely important in ensuring continuation of health care for our young people with asthma and allergies. However, there are many challenges faced by allergy clinics and healthcare professionals in providing a transition service, particularly a lack of funding, resources and training and a lack of psychological support. A recent paper has highlighted the unmet need for psychological services in the UK for food allergy.10 There are also practicalities and challenges around information access and integrating transition across primary, secondary and tertiary care within the NHS. To help healthcare providers, the EAACI Taskforce is currently developing a toolkit that will be accessible online and will provide materials to assist in the development of transition services for AYA. It is hoped that the new guidelines and toolkit will help the development of effective transition services in allergy services across the UK. Both RCK and CG are members of the Allergic Diseases in Adolescents and Young People EAACI Taskforce.

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