The journey for adolescents and young adults with chronic conditions transitioning to adult care with successful warfarin management

2016 ◽  
Vol 141 ◽  
pp. 183-188 ◽  
Author(s):  
M.E. Bauman ◽  
S. Kuhle ◽  
A.A.K. Bruce ◽  
L. Bolster ◽  
M.P. Massicotte
2020 ◽  
Vol 17 ◽  
Author(s):  
Tetine Sentell ◽  
So Yung Choi ◽  
Lance Ching ◽  
Michelle Quensell ◽  
L. Brooke Keliikoa ◽  
...  

2020 ◽  
Vol 66 (1) ◽  
pp. 92-99
Author(s):  
Annette H. Sohn ◽  
Kulkanya Chokephaibulkit ◽  
Pagakrong Lumbiganon ◽  
Rawiwan Hansudewechakul ◽  
Yasmin Mohamed Gani ◽  
...  

Blood ◽  
2004 ◽  
Vol 104 (11) ◽  
pp. 3743-3743 ◽  
Author(s):  
Samir K. Ballas ◽  
Carlton Dampier

The transition of medical care of patients with sickle cell disease (SCD) from pediatric to adult providers represents a milestone in their lives. Major concerns among adolescents and young adults about transition include taking responsibility for self, making own decisions, cost of medical care, fear of suboptimal pain management, and reluctance to leave known providers. In this study we present our experience in the process of transition to adult care and its outcome over the last ten years. Adolescents and young adults were given information about the nature of medical care provided by adult internists and hematologists. The sickle cell programs available in the city were described. Moreover, site visits to the hospitals where adult care was to be provided were arranged. During these visits, adolescents and young adults had the chance to meet the hematologist and other potential providers and ask questions, visit the emergency room, the clinic, and the sickle day unit if applicable. Patients were empowered to choose the program to which they wished to be transitioned. During the last 10 years, 90 adolescents and young adults (See Table) with SCD (Sickle Cell Anemia [SS], Hemoglobin SC Disease, and Sickle Thalassemia [ST]) were transitioned to the adult sickle cell program of Thomas Jefferson University. Age of transition varied between 18 and 25 years. Eighteen patients (20%) died. Age at death was 24.9 ± 2.95 years and the male/female ratio was 10:8. Complications of sickle cell disease after transition included leg ulcers, stroke, avascular necrosis, anxiety, depression, and priapism. Nineteen patients (10 males, 9 females) were employed. Twenty-nine (32%) patients developed chronic pain syndrome and its sequelae. Many patients failed to achieve their childhood goals. The data show that a significant number of patients die within 10 years after transition. The quality of life of survivors is suboptimal and drifts into issues of chronic pain management in the adult environment. Identifying these issues may provide predictors that identify children at risk to have undesirable outcomes after transition. Aggressive management and refining the process of transition should improve the outcome after transition. Distribution of the Transitioned Patients SS SC ST Total Male 31 8 4 43 Female 34 8 5 47 Total 65 16 9 90


2015 ◽  
Vol 30 (5) ◽  
pp. e29-e35 ◽  
Author(s):  
Donna Maturo ◽  
Alexis Powell ◽  
Hannah Major-Wilson ◽  
Kenia Sanchez ◽  
Joseph P. De Santis ◽  
...  

2019 ◽  
Author(s):  
Kyleigh Schraeder ◽  
Gina Dimitropoulos ◽  
Kerry McBrien ◽  
Jessica (Yijia) Li ◽  
Susan Samuel

Abstract Background: Transitioning from pediatric care to adult-oriented care at age 18 (the age of transfer in most countries and jurisdictions) is a complex process for adolescents and young adults affected by chronic physical health and/or mental health conditions. The role of primary health care providers for this population is poorly understood. Perspectives from these providers, such as family physicians and other members of the primary care team, have not been explored in depth. Methods: A total of 18 participants (e.g., family physicians, social workers, nurses) were recruited from 6 Primary Care Networks in Calgary, Alberta, Canada. Semi-structured individual interviews were conducted, and transcribed verbatim. A qualitative description approach was used to analyze the data, and included thematic analysis. Results: Five distinct, yet overlapping, roles of primary health care providers for adolescents and young adults transitioning to adult care resulted from our analysis: (1) being the “common thread” (continuous accessible care); (2) caring for the “whole patient” (comprehensive care); (3) “knowing families” (family-partnered care); (4) “empowering” adolescents and young adults to develop “personal responsibility”(developmentally-appropriate care); and (5) “quarterbacking” care (coordination of specialist and/or community-based care). Participants identified potential benefits of these roles for adolescents and young adults transitioning to adult care, and barriers in practice (e.g., lack of time, having minimal involvement in pediatric care). Conclusions: Input from family physicians, who follow their patients across the lifespan and provide the majority of primary care in Canada, are critical for informing and refining recommended transition practices. Our findings provide insights, from PHC providers themselves, to bolster the rationale for primary care involvement during transitions from pediatric specialty and community-based care for AYAs. Solutions to overcome barriers for integrating primary care and specialty care for adolescents and young adults need to be identified, and tested, with input from key stakeholders.


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