scholarly journals Using qualitative perspectives of adolescents with sickle cell disease and caregivers to develop healthcare transition programming.

2017 ◽  
Vol 5 (4) ◽  
pp. 319-329 ◽  
Author(s):  
Jerlym S. Porter ◽  
Alana D. Lopez ◽  
Kimberly M. Wesley ◽  
Paige Magdovitz-Frankfurt ◽  
Sheila M. Anderson ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease ◽  
Transition Programming ◽  
Healthcare Transition

scholarly journals Transition to adulthood and adult health care for patients with sickle cell disease or cystic fibrosis: Current practices and research priorities

2018 ◽  
Vol 2 (5) ◽  
pp. 334-342 ◽  
Author(s):  
Sophie Lanzkron ◽  
Gregory S. Sawicki ◽  
Kathryn L. Hassell ◽  
Michael W. Konstan ◽  
Robert I. Liem ◽  
...  
Keyword(s):  
Health Care ◽  
Cystic Fibrosis ◽  
Sickle Cell Disease ◽  
Transition To Adulthood ◽  
Sickle Cell ◽  
Task Force ◽  
Cell Disease ◽  
Childhood Onset ◽  
Healthcare Transition ◽  
Provider Perspectives

AbstractIntroductionA growing population of adults living with severe, chronic childhood-onset health conditions has created a need for specialized health care delivered by providers who have expertise both in adult medicine and in those conditions. Optimal care of these patients requires systematic approaches to healthcare transition (HCT). Guidelines for HCT exist, but gaps in care occur, and there are limited data on outcomes of HCT processes.MethodsThe Single Disease Workgroup of the Lifespan Domain Task Force of the National Center for Advancing Translational Sciences Clinical and Translational Science Award programs convened a group to review the current state of HCT and to identify gaps in research and practice. Using cystic fibrosis and sickle cell disease as models, key themes were developed. A literature search identified general and disease-specific articles. We summarized key findings.ResultsWe identified literature characterizing patient, parent and healthcare provider perspectives, recommendations for transition care, and barriers to effective transition.ConclusionsWith increased survival of patients with severe childhood onset diseases, ongoing study of effective transition practices is essential as survival increases for severe childhood onset diseases. We propose pragmatic methods to enhance transition research to improve health and key outcomes.

scholarly journals Cognitive performance as a predictor of healthcare transition in sickle cell disease

2021 ◽  
Author(s):  
Anjelica C. Saulsberry‐Abate ◽  
Marita Partanen ◽  
Jerlym S. Porter ◽  
Pradeep S. B. Podila ◽  
Jason R. Hodges ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Cognitive Performance ◽  
Sickle Cell ◽  
Cell Disease ◽  
Healthcare Transition

Hemolysis in sickle cell disease

1974 ◽  
Vol 133 (4) ◽  
pp. 624-631 ◽  
Author(s):  
T. A. Bensinger
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease

Computerized cognitive training in pediatric sickle cell disease: A randomized controlled pilot study.

2020 ◽  
Vol 8 (4) ◽  
pp. 390-401 ◽  
Author(s):  
Taryn M. Allen ◽  
Lindsay M. Anderson ◽  
Samuel M. Brotkin ◽  
Jennifer A. Rothman ◽  
Melanie J. Bonner
Keyword(s):  
Pilot Study ◽  
Sickle Cell Disease ◽  
Cognitive Training ◽  
Sickle Cell ◽  
Cell Disease ◽  
Computerized Cognitive Training ◽  
Randomized Controlled ◽  
Pediatric Sickle Cell Disease
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