Persistent Severe Fatigue among Adolescents with Immune Dysregulation Disorders: Advancing Knowledge and Treatment of Severe Fatigue

Abstract

Fatigue is common among adolescents. It is usually a harmless phenomenon resulting from physical or mental exertion, and often resolves with rest. However, if fatigue persists and makes it difficult to perform regular activities, it can significantly impact daily life. This is often the case for adolescents with a chronic medical condition: they frequently suffer from severe fatigue. This dissertation focuses on adolescents with immune dysregulation disorders (IDD), such as autoimmune diseases and congenital immune deficiencies. The dissertation describes how persistent physical symptoms, such as fatigue and pain, affect their lives. The first part of the research investigates the prevalence of severe fatigue among adolescents with IDD. More than a quarter of them report persistent severe fatigue, even when their disease is well-controlled. This fatigue significantly limits their physical, social, and school activities. Additionally, this dissertation examines the relationship between pain and fatigue, revealing that these symptoms are closely linked. It is often thought that fatigue in chronic medical conditions is difficult to influence, as it may be seen as a consequence of a dysregulated immune system. However, this dissertation emphasizes the importance of a broader approach, considering not only biological factors (such as disease-related factors) but also environmental and child factors. Since adolescents are in a crucial developmental phase, it is particularly important during this period to minimize the impact of fatigue as much as possible. The second part of the dissertation discusses the development of online cognitive behavioral therapy for severely fatigued adolescents with IDD. Its effectiveness and feasibility of this therapy were investigated. Results show that these adolescents benefit significantly from the treatment, with a reduction in fatigue and related limitations. No adverse side effects were found. This dissertation enhances the understanding and knowledge of persistent fatigue in adolescents with IDD. By timely identifying modifiable factors related to fatigue, appropriate treatment can positively influence their development and quality of life. The findings provide valuable insights and potential treatment strategies for severe fatigue in adolescents with IDD and possibly for those with other chronic medical conditions as well.