Uncertainty in Young Adult Survivors of Childhood and Adolescent Cancer with Lower-Extremity Bone Tumors in Japan

2019 ◽  
Vol 8 (3) ◽  
pp. 291-296 ◽  
Author(s):  
Shoko Katsumoto ◽  
Mitsue Maru ◽  
Tsukasa Yonemoto ◽  
Rumi Maeda ◽  
Keisuke Ae ◽  
...  
2010 ◽  
Vol 55 (7) ◽  
pp. 1370-1376 ◽  
Author(s):  
Maru Barrera ◽  
Tanya Teall ◽  
Ronald Barr ◽  
Mariana Silva ◽  
Mark Greenberg

2012 ◽  
Vol 60 (7) ◽  
pp. 1223-1230 ◽  
Author(s):  
Tanya Teall ◽  
Maru Barrera ◽  
Ronald Barr ◽  
Mariana Silva ◽  
Mark Greenberg

2017 ◽  
Vol 26 (01) ◽  
pp. 250-264 ◽  
Author(s):  
Rebecca S Williamson ◽  
Brooke O Cherven ◽  
Jordan Gilleland Marchak ◽  
Paula Edwards ◽  
Michael Palgon ◽  
...  

Summary Background and Objectivs: Survivors of pediatric and adolescent cancer are at an increased risk of chronic and debilitating health conditions and require life-long specialized care. Stand-alone electronic personal health records (ePHRs) may aid their self-management. This analysis characterizes young adult survivors and parents who meaningfully use an ePHR, Cancer SurvivorLinkTM, designed for survivors of pediatric and adolescent cancer. Methods: This was a retrospective observational study of patients seen at a pediatric survivor clinic for annual survivor care. Young adult survivors and/or parent proxies for survivors <18 years old who completed ePHR registration prior to their appointment or within 90 days were classified as registrants. Registrants who uploaded or downloaded a document and/or shared their record were classified as meaningful users. Results: Overall, 23.7% (148/624) of survivors/parents registered and 38% of registrants used SurvivorLink meaningfully. Young adult registrants who transferred to adult care during the study period were more likely to be meaningful users (aOR: 2.6 (95% CI: 1.1, 6.1)) and used the ePHR twice as frequently as those who continued to receive care in our institution’s pediatric survivor clinic. Among survivors who continued to receive care at our institution, being a registrant was associated with having an annual follow-up visit (aOR: 2.6 (95% CI: 1.2, 5.8)). Conclusions: While ePHRs may not be utilized by all survivors, SurvivorLink is a resource for a subset and may serve as an important bridge for patients who transfer their care. Using SurvivorLink was also associated with receiving recommended annual survivor care.


2011 ◽  
Vol 58 (2) ◽  
pp. 265-273 ◽  
Author(s):  
Maru Barrera ◽  
Tanya Teall ◽  
Ronald Barr ◽  
Mariana Silva ◽  
Mark Greenberg

2010 ◽  
Vol 28 (32) ◽  
pp. 4810-4818 ◽  
Author(s):  
David R. Freyer

Purpose Young adult survivors of childhood and adolescent cancer are an ever-growing population of patients, many of whom remain at lifelong risk for potentially serious complications of their cancer therapy. Yet research shows that many of these older survivors have deficient health-related knowledge and are not engaging in recommended health promotion and screening practices that could improve their long-term outcomes. The purpose of this review is to address these disparities by discussing how formal transition of care from pediatric to adult-focused survivorship services may help meet the unique medical, developmental, and psychosocial challenges of these young adults. Design Literature review and discussion. Results This article summarizes current research documenting the medical needs of young adult survivors, their suboptimal compliance with recommended follow-up, and the rationale, essential functions, current models, and innovative approaches for transition of follow-up care. Conclusion Systematic health care transition constitutes the standard of care for young adult survivors of childhood cancer. In developing a transitional care program, it is necessary to consider the scope of services to be provided, available resources, and other local exigencies that help determine the optimal model for use. Additional research is needed to improve health services delivery to this population. Effective advocacy is needed, particularly in the United States, to ensure the availability of uninterrupted health insurance coverage for survivorship services in young adulthood.


2018 ◽  
Author(s):  
Jennifer L. Lee ◽  
Gunan R. Ganju ◽  
Jordan G. Marchak ◽  
Ronica Nanda ◽  
Mehul M. Shah ◽  
...  

2014 ◽  
Author(s):  
Dalnim Cho ◽  
Crystal L. Park ◽  
Alexis Berglund ◽  
Jack Olexovitch ◽  
Alexandra Snavely ◽  
...  

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