One in five adolescents have special healthcare needs; one in 10 face limitations to daily activities due to chronic illness or disability. Taken alongside the ever-changing societal landscape and the multifaceted psychological aspects of adolescence, these statistics underline the need to recognise adolescents and young adults as a distinct patient population with unique healthcare needs. This Monograph addresses this need. Opening with chapters that discuss health inequalities, adolescent psychology and treatment adherence, the book goes on to cover specific respiratory diseases and the requirements of their adolescent subjects. Readers will find this Monograph a useful and interesting insight into adolescent health.
- Page 1AbstractCorresponding author: Vhari Forsyth (vhariforsyth@googlemail.com)
This chapter explores the evolution of adolescent health as a unique and emerging subspecialty, shaped by advances in biological and psychological research, increasing morbidity and mortality of young people coupled with societal changes, and the adolescent health movement. Beginning in the late 19th century with observations on boarding school students, early research focused on understanding the biological aspects of puberty, led by pioneers like Marshall and Tanner. Psychological studies delved into the emotional and behavioural changes during adolescence, with contributions from psychologists like Hall and Erickson. The narrative spans key medical advances, including studies on adolescent mental health from the 1930s to the 1970s, the rise of chronic diseases among young people, and the impact of cultural shifts on morbidity and mortality. Notable societal changes, such as the sexual revolution, the women's rights movement and the emergence of HIV/AIDS, brought adolescent health into the spotlight. This chapter emphasises the need for a holistic approach to address various challenges affecting the youth population, including substance abuse, obesity and eating disorders, and underscores the importance of early intervention and collaborative efforts between paediatric, adolescent and adult services. The HEeADSSS assessment tool is highlighted as a comprehensive psychosocial approach, aiding HCPs in identifying risk and protective factors. The chapter concludes by emphasising the ongoing need for vigilance in adapting healthcare practices to the evolving trends and attitudes of adolescents.
Cite as: Forsyth V. Adolescent health: a brief introduction. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 1–11 [https://doi.org/10.1183/2312508X.10010823].
- Page 12AbstractCorresponding author: Ann Hagell (ann@ayph.org.uk)
AYA come from a range of different backgrounds, and these diverse lived experiences have varying physical and mental health outcomes. These outcomes are “health inequalities”. Poorer health outcomes have been linked with socioeconomic status and the wider context of people's lives – these are “social determinants of health”. Certain social determinants are particularly influential in shaping young people's health, including economic status, ethnicity, education, employment, housing and transport. Differences caused by these social factors are unfair and preventable. Young people living in areas of high deprivation experience, for example, higher mortality, more disability, more long-term health conditions, higher rates of mental health problems and higher levels of obesity. In this chapter, we explore the health inequalities and their social determinants experienced by young people and consider the importance of youth-friendly health services as part of the solution.
Cite as: Hagell A, McKeown R. Health inequalities and the social determinants of adolescent health. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 12–22 [https://doi.org/10.1183/2312508X.10010923].
- Page 23AbstractCorresponding author: Rachael Anne Brandreth (Rachael.brandreth@nhs.net)
Living with obesity as a child or young person has both immediate and long-term consequences on physical health, mental health and social wellbeing. Identification of medical and psychological complications of excess weight is an essential step in improving our understanding of this population, and subsequently being able to improve their lives. Complications of excess weight have an impact on multiple organ systems and include, but are not limited to, depression, anxiety, type 2 diabetes, idiopathic intracranial hypertension, metabolic dysfunction-associated fatty liver disease and obstructive sleep apnoea. Societal stigma can have a pervasive effect on individuals and their families and can come from within communities as well as being experienced in healthcare settings. The causes of obesity are complex and multifactorial; a biopsychosocial approach to treatment is therefore essential.
Cite as: Brandreth RA, Semple C, Dias R, et al. Obesity and complications of excess weight in children and young people. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 23–37 [https://doi.org/10.1183/2312508X.10011023].
- Page 38AbstractCorresponding author: Kirsten Stewart-Knight (kirsten.stewart-knight@gstt.nhs.uk)
This chapter will summarise key concepts and literature in adolescent psychology, focusing on helping medical professionals to optimise support for teenage respiratory patients in their transition from paediatric to adult services. Transition occurs at a critical time in adolescent neuropsychological and emotional development and there has historically been a lack of attention given to the needs of adolescents at this stage. In recent years, knowledge of the brain and mind has exponentially developed, and this can be applied to understanding and meeting the needs of transitioning respiratory patients. Tailored support includes encouraging adolescents to take steps to look after their own health, whilst encouraging openness and support from the people around them where appropriate. Supportive interventions to increase adolescents’ self-efficacy and knowledge of their condition and to promote positive health behaviour are fostered by strong relationships between young people and HCPs. Clinical examples and recommendations for practice will be shared.
Cite as: Stewart-Knight K, Carroll S. “I just want to get on with my life”: adolescent psychology for respiratory clinicians. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 38–53 [https://doi.org/10.1183/2312508X.10011123].
- Page 54AbstractCorresponding author: Gráinne d'Ancona (grainne.dancona@gstt.nhs.uk)
Medication adherence in long-term conditions is poor across all ages and can have devastating consequences for patient health. This non-adherence can be difficult to detect, is usually multifactorial and needs individualised patient-centric interventions to achieve improvement. This chapter looks at how the non-adherence to drug treatment of adolescents with asthma and CF mirrors and differs from that of younger children or adults, and describes the evidence-based behavioural strategies used for improvement.
Cite as: Pearce CJ, Azam A, Barry PJ, et al. Adherence to medicine in adolescence. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 54–65 [https://doi.org/10.1183/2312508X.10011223].
- Page 66AbstractCorresponding author: Stijn Verhulst (stijn.verhulst@uantwerpen.be)
There are clear differences in obstructive sleep apnoea pathogenesis between children, adolescents and adults. Since evidence-based approaches in the diagnostic and treatment algorithms for adolescents are lacking, and because of the inherent challenges of adolescence, we recommend more specific research and a tailored, individualised approach to sleep apnoea in adolescents.
Cite as: Verhulst S, Van de Perck E, Slaats M, et al. Obstructive sleep apnoea. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 66–77 [https://doi.org/10.1183/2312508X.10011323].
- Page 78AbstractCorresponding author: Hui-Leng Tan (H.Tan@rbht.nhs.uk)
The landscape of neuromuscular disease (NMD) is changing: new disease-modifying therapies including gene therapy are now in clinical use, with many more in development. There is a case for cautious optimism, with the real expectation that more patients are going to survive and be transitioned to adult services. New “treated” phenotypes are likely to emerge and long-term outcomes are still unknown. In this chapter, we highlight some of the latest clinical developments in NMD, particularly focusing on spinal muscular atrophy as it has seen some of the most rapid changes in the past few years. We also highlight the unique aspects of transition in NMD and long-term ventilation patients, and emphasise the importance of a multidisciplinary approach in this process.
Cite as: Tan H-L, Simonds AK. Neuromuscular diseases and long-term ventilation. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 78–94 [https://doi.org/10.1183/2312508X.10011423].
- Page 95AbstractCorresponding author: Renata L. Riha (rlriha@hotmail.com)
There is a dearth of literature on transition of care from childhood to adulthood in sleep disorders and relatively few guidelines exist in the medical literature to inform this crucial period of medical care. However, transition of patients with narcolepsy is comparatively straightforward in comparison with other neurological conditions. Nevertheless, challenges do remain vis-à-vis lifelong use of psychostimulant medication in narcolepsy, which carries specific risks including cardiovascular and psychological adverse events, and effects on child-bearing, driving and certain vocations.
Cite as: Riha RL, McLellan A, McPherson J, et al. Transition to adult care of children with narcolepsy and other disorders of central hypersomnolence. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 95–106 [https://doi.org/10.1183/2312508X.10011523].
- Page 107AbstractCorresponding author: Gary Connett (gary.connett@uhs.nhs.uk)
CF services have led the way in developing transitional processes for young people with chronic medical conditions. Successful components of good transition include close collaborative working between adult and paediatric services to ensure continuity of care and, in particular, the AYA meeting the adult team and visiting the adult centre prior to transfer. AYA should be empowered to be actively involved in decision-making about their care. CF transmembrane conductance regulator modulators have had a major impact on the life-course and burden of care for AYA with CF. More than ever, the CF transition process needs to be bespoke to the specific needs of AYA who may or may not be benefiting from this treatment. For the majority, the focus will shift from a high burden of care and eating an energy-dense diet to an emphasis on healthy living including regular exercise. Adherence to all aspects of care will remain essential to achieving good outcomes, especially as AYA take on increasing responsibility for meeting their own healthcare needs.
Cite as: Connett G. Cystic fibrosis. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 107–119 [https://doi.org/10.1183/2312508X.10011623].
- Page 120AbstractCorresponding author: Anna Shawcross (anna.shawcross@mft.nhs.uk)
AYA with bronchiectasis are a variable group with many different aetiologies, mostly distinct from those of older patients with bronchiectasis seen in a general adult pulmonology clinic. They are at risk of less good preparation for transition and less good engagement with adult services than peers with similar conditions such as CF. They require specialist multidisciplinary management, with consideration of a number of factors, including comorbid conditions, socioeconomic background and adherence to therapy. As a result of the changes experienced during adolescence, they are at risk of reduced adherence to treatment. The approach to the AYA with bronchiectasis should be multidisciplinary, and include education about the condition, non-judgemental advice about lifestyle choices and regular reviews of adherence/treatment burden (particularly airway clearance) with the young person as an active partner. Ideally, in both paediatric and adult services, AYA with bronchiectasis should be managed in a unit with appropriate expertise in managing childhood-onset bronchiectasis and experience of supporting AYA.
Cite as: Shawcross A, Shteinberg M. Transitioning from paediatric to adult care in bronchiectasis. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 120–133 [https://doi.org/10.1183/2312508X.10011723].
- Page 134AbstractCorresponding author: Hannah Douglas (hannah.douglas@gstt.nhs.uk)
Pulmonary arterial hypertension is a complex and life-limiting condition. When it affects the AYA population, it must be managed holistically and sensitively to ensure seamless transition from paediatric care. Special considerations must be given and it is important that team members with appropriate expertise are accessible to individual patients and provide support to family members, with the aim of improving outcomes. Lifelong, continuous care should support patients through the diagnostic process, therapy and lifestyle adaptations, ensuring early access to information about employment, contraception and family planning, as well as prognosis, advanced treatment options and end-of-life care.
Cite as: Douglas H, Marino P. Pulmonary hypertension and congenital heart disease. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 134–143 [https://doi.org/10.1183/2312508X.10011823].
- Page 144AbstractCorresponding author: Silvia Sánchez-García (silviasanchezgarcia@hotmail.com)
Biological, emotional, psychological and social changes occur rapidly during adolescence, and asthma management should change from caregiver-centred to patient-centred. Ideally, this should happen progressively from 11 to 25 years of age. Although asthma remission is frequent at this age, adolescent-onset asthma has been described and other existing patients evolve to develop a more severe form of the disease. Atopy, eosinophils and T2 biomarkers are related to worse outcomes. Adherence to maintenance therapy is a particular challenge in adolescence; this may improve with a multidisciplinary approach and through support with new technologies. Effective transition from a paediatric to an adult setting should include providing patients with the skills and knowledge to manage their asthma independently.
Cite as: Sánchez-García S, Garriga-Baraut T, Fernández-de-Alba I. Asthma. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 144–165 [https://doi.org/10.1183/2312508X.10011923].
- Page 166AbstractCorresponding author: Kjeld Hansen (kjeld.hansen@europeanlung.org)
This chapter presents patient perspectives on the transition between paediatric and adult care. It draws on published literature and collected narratives from both parents/carers and individuals who have experienced the transition of care within respiratory services. The experiences offer an insight into personal journeys through this challenging stage, gathered from a range of individuals living with different respiratory diseases and from a range of countries to represent the variance in experiences across the region.
Cite as: Hansen K, Anderson L. Transition of care: the patient perspective. In: Nanzer AM, Barry PJ, Kent BD, eds. The Transition of Respiratory Care: from Child to Adult (ERS Monograph). Sheffield, European Respiratory Society, 2024; pp. 166–176 [https://doi.org/10.1183/2312508X.10035623].
