Self-Management and Health Care Transition Among Adolescents and Young Adults With Chronic Kidney Disease: Medical and Psychosocial Considerations

2017 ◽  
Vol 24 (6) ◽  
pp. 405-409 ◽  
Author(s):  
Maria E. Díaz-González de Ferris ◽  
Marta Del Villar-Vilchis ◽  
Ricardo Guerrero ◽  
Victor M. Barajas-Valencia ◽  
Emily B. Vander-Schaaf ◽  
...  
2015 ◽  
Vol 39 (1-3) ◽  
pp. 99-104 ◽  
Author(s):  
Maria E. Ferris ◽  
Jessica R. Cuttance ◽  
Karina Javalkar ◽  
Sarah E. Cohen ◽  
Alexandra Phillips ◽  
...  

Background: Adolescents/young adults (AYA) with chronic kidney disease (CKD) or end-stage kidney disease (ESKD) are at risk for poor health outcomes related to self-management. To improve their health and quality of life, AYA must build self-management (for those in the pediatric- and adult-focused setting) and/or health care transition (HCT) skills (for those in the pediatric setting). Methods: Self-management and/or HCT encompass a variety of domains that must be tailored to each individual. Annual assessments should begin between the ages of 12 and 14 and continue in the adult-focused setting until patients have achieved demonstrated self-management and/or HCT skills mastery. These assessments will guide interventions that are congruent in terms of literacy, development and culture. Facilitation of this process from the perspective of both the pediatric and the adult health-care systems is described. Conclusions: Deficiencies and barriers to self-management and/or HCT for AYA with ESKD remain. There is no consensus on the definition of successful HCT preparation, with few tools to assess transition readiness and/or self-management. It is important for health providers to promote the self-management and/or health-care transition skills of AYA with ESKD. Customization of these activities and involvement of the whole family will contribute towards better health-related quality of life and patient outcomes.


2010 ◽  
Vol 28 (3) ◽  
pp. 99-106 ◽  
Author(s):  
M. E. Bowen ◽  
J. A. Henske ◽  
A. Potter

2020 ◽  
Vol 40 (01) ◽  
pp. 097-104
Author(s):  
Christoph Bidlingmaier ◽  
Martin Olivieri ◽  
Freimut H. Schilling ◽  
Karin Kurnik ◽  
Isabell Pekrul

AbstractPatients suffering from haemophilia encounter various phases in life, in which individual needs, life situations, and self- and disease perception change rapidly. One of these phases spans from the beginning of puberty until early adulthood, in which individuals gain self-responsibility and reach independence and autonomy. In this challenging time that determines future health, adolescents and young adults need sustainable familiar and professional support. A change in health care team and treatment centre may expose adolescent patients to threats but also provides the possible opportunity to be well prepared. While there is emerging evidence that the so-called health care transition programmes are effective in maintaining quality of care in other disease areas, transition programmes for patients with haemophilia are still rare in Germany, and the evidence is limited. We describe the situation in Germany, discuss our experience in Munich and review some of the available guidance; we conclude that transition programmes should become a standard of care in haemophilia.


Sign in / Sign up

Export Citation Format

Share Document