Primary Immunodeficiencies (also called Inborn Errors of Immunity) are chronic diseases usually diagnosed during childhood or adolescence, although it has now been well established that complications occur throughout the life course of patients with all forms of PIDs.
Tremendous improvements in patient diagnosis, management, and care have allowed for an improved survival in the last decades. But as patients will require long-term multidisciplinary management including transition care from the pediatric setting to adult services, patients, caregivers, and healthcare professionals (including adult physicians) may face many — sometimes unforeseen — challenges. It is now well established that an effective process is of utmost importance to improve long-term outcome of adolescents and young adults (AYA) with chronic conditions.
Transition has been defined as ‘a purposeful, planned process that addresses the medical, psychological, and educational/vocational needs of AYA with chronic physical and medical conditions as they move from child-centered to adult-oriented health care systems’. Timing and progression of transition preparation during adolescence is key. Some tools assessing youth readiness for transition are available (mostly in the English language). Understanding and sharing transition practices of transition for patients with PID is an emerging field in the PID community.
Contributions may cover different topics including the transition process, how chronic diseases such as PID may impact adolescence, the specific transition requirements and challenges associated with certain PIDs or with specific disease-related considerations such as learning difficulties, complex needs, prior hematopoietic stem cell transplant, or gene therapy. Contributions may:
• Highlight The value of clinical psychologists’ expertise, and the need for AYA transition clinics and/or programs.
• Contrast transition care in the context of different healthcare systems.
• Share guidelines or good/best practice recommendations that may be supported by local, national or international evidence or research.
• Delineate the key components of transition preparation and implementation
• Describe the objectives and measurable outcomes of transitional care
• Describe the impact of chronic illness on physical, emotional, sexual, social, and cognitive development and the reciprocal impact of normal adolescent development on chronic illness
• Explain how chronic disease and intellectual impairment uniquely impact the process of transition preparation and the challenges they pose for the transfer of care
• List the consequences in young adulthood of ineffective, delayed, or unsuccessful transition
This Research Topic welcomes all Contributions covering all aspects of transition care in Primary Immunodeficiencies: Manuscripts may include primary (original) data, Review articles, Perspective, General Commentaries, or opinions. All healthcare professionals are welcome to submit (including but not limited to nurses, psychologists, and physiotherapists). Also, focused patient perspectives and testimonies are welcome. Adult physician contributions to Transition care are expected and will enrich the perspectives on this topic.
Primary Immunodeficiencies (also called Inborn Errors of Immunity) are chronic diseases usually diagnosed during childhood or adolescence, although it has now been well established that complications occur throughout the life course of patients with all forms of PIDs.
Tremendous improvements in patient diagnosis, management, and care have allowed for an improved survival in the last decades. But as patients will require long-term multidisciplinary management including transition care from the pediatric setting to adult services, patients, caregivers, and healthcare professionals (including adult physicians) may face many — sometimes unforeseen — challenges. It is now well established that an effective process is of utmost importance to improve long-term outcome of adolescents and young adults (AYA) with chronic conditions.
Transition has been defined as ‘a purposeful, planned process that addresses the medical, psychological, and educational/vocational needs of AYA with chronic physical and medical conditions as they move from child-centered to adult-oriented health care systems’. Timing and progression of transition preparation during adolescence is key. Some tools assessing youth readiness for transition are available (mostly in the English language). Understanding and sharing transition practices of transition for patients with PID is an emerging field in the PID community.
Contributions may cover different topics including the transition process, how chronic diseases such as PID may impact adolescence, the specific transition requirements and challenges associated with certain PIDs or with specific disease-related considerations such as learning difficulties, complex needs, prior hematopoietic stem cell transplant, or gene therapy. Contributions may:
• Highlight The value of clinical psychologists’ expertise, and the need for AYA transition clinics and/or programs.
• Contrast transition care in the context of different healthcare systems.
• Share guidelines or good/best practice recommendations that may be supported by local, national or international evidence or research.
• Delineate the key components of transition preparation and implementation
• Describe the objectives and measurable outcomes of transitional care
• Describe the impact of chronic illness on physical, emotional, sexual, social, and cognitive development and the reciprocal impact of normal adolescent development on chronic illness
• Explain how chronic disease and intellectual impairment uniquely impact the process of transition preparation and the challenges they pose for the transfer of care
• List the consequences in young adulthood of ineffective, delayed, or unsuccessful transition
This Research Topic welcomes all Contributions covering all aspects of transition care in Primary Immunodeficiencies: Manuscripts may include primary (original) data, Review articles, Perspective, General Commentaries, or opinions. All healthcare professionals are welcome to submit (including but not limited to nurses, psychologists, and physiotherapists). Also, focused patient perspectives and testimonies are welcome. Adult physician contributions to Transition care are expected and will enrich the perspectives on this topic.
