scholarly journals Peritransition Outcomes of Southeast Asian Adolescents and Young Adults With HIV Transferring From Pediatric to Adult Care

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.


2022 ◽  
Author(s):  
Reem Abdwani ◽  
Rumaitha Al Sabri ◽  
Zawan Zawan Alhasni ◽  
Seyad Rizvi ◽  
Humaid Al Wahshi ◽  
...  

Abstract Introduction:In Oman, the “transfer” healthcare rather than the “transition” of health care of adolescents to adult care occurs at a young age, like many other GCC countries for cultural reasons. In order to address this concern, this study was conducted to determine the transition readiness skills of adolescents and young adults with childhood onset rheumatic diseases using a cross-cultural adaptation of the UNC TRxANSITION scale.Methods: We used a professionally translated/back translated, provider-administered UNC TRxANSITION Scale. This 32-question scale measures HCT in ten domains including knowledge about diagnosis or treatment, diet, reproductive health, school/work, insurance, ability to self-manage and looking for new health providers. The maximum transitional score of 10, was categorized as low (1-4), moderate (4 - 7) and high (7 -10) transitional readiness scores.Results:We enrolled 81 Omani adolescents and young adults (AYA) with chronic childhood onset rheumatic diseases. The cohort consisted of 79% females, with mean age of 15.8 years (± 3.53) and mean disease duration of 6.95 years (± 4.83). Our cohort's overall mean score is low 5.22 (±1.68). Only 14.8% of the cohort achieved a high transition score ≥7). Significant direct relationship was observed between age and the mean transition readiness score (r = .533, P < .001). The mean transition readiness score in the younger age group (10-13 years) was 4.07 (±1.29), the middle age group (14-18 years) was 5.43 ( ±1.27), while the older age group (19-21 year), was 6.12 ( ±1.81), Mean transition score of youngest age group was found to be significantly lower than the other two age groups (p =.003).Conclusion:Overall, the transition readiness of AYA in Oman is low compared to other western countries indicating the need to initiate a health care transition preparation program for patients with chronic diseases across the country. In addition, we need to establish regional guidelines to address the transitional age policy to be in line to international recommendations.


2021 ◽  
pp. 609-626
Author(s):  
Helena Gleeson

This chapter covers endocrine concerns in the age group 10-24 years. It starts with an overview of transitional endocrinology and biopsychosocial development, aspects of developmentally appropriate healthcare, and how to perform a consultation for adolescents and young adults. It covers common clinical endocrine presentations of young people during adolescence, and how to approach a young person with an endocrine condition undergoing transition into adult care. The management of young people with hypopituitarism and growth hormone deficiency is outlined.


2012 ◽  
Vol 50 (3) ◽  
pp. S1-S3 ◽  
Author(s):  
Laurie Schwab Zabin ◽  
Laurie Schwab Zabin ◽  
Robert Wm. Blum ◽  
David Bishai ◽  
Ersheng Gao ◽  
...  

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