scholarly journals Tricuspid regurgitation velocity and other biomarkers of mortality in children, adolescents and young adults with sickle cell disease in the United States: The PUSH study

2020 ◽  
Vol 95 (7) ◽  
pp. 766-774 ◽  
Author(s):  
Mehdi Nouraie ◽  
Deepika S. Darbari ◽  
Sohail Rana ◽  
Caterina P. Minniti ◽  
Oswaldo L. Castro ◽  
...  
Keyword(s):  
United States ◽  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Tricuspid Regurgitation ◽  
The United States ◽  
Adolescents And Young Adults ◽  
Cell Disease

Red cell storage age policy for patients with sickle cell disease: A survey of transfusion service directors in the United States

2016 ◽  
Vol 54 (1) ◽  
pp. 158-162 ◽  
Author(s):  
Matthew S. Karafin ◽  
Arun K. Singavi ◽  
Mehraboon S. Irani ◽  
Kathleen E. Puca ◽  
Lisa Baumann Kreuziger ◽  
...  
Keyword(s):  
United States ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
The United States ◽  
Red Cell ◽  
Cell Disease ◽  
Cell Storage

scholarly journals The Economic Burden of Sickle Cell Disease in the United States

2018 ◽  
Vol 21 ◽  
pp. S108 ◽  
Author(s):  
J Huo ◽  
H Xiao ◽  
M Garg ◽  
C Shah ◽  
DJ Wilkie ◽  
...  
Keyword(s):  
United States ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Economic Burden ◽  
The United States ◽  
Cell Disease

Childhood Hearing Loss in Patients With Sickle Cell Disease in the United States

2019 ◽  
Vol 41 (2) ◽  
pp. 124-128 ◽  
Author(s):  
Heather K. Schopper ◽  
Christopher F. D’Esposito ◽  
John S. Muus ◽  
Julie Kanter ◽  
Ted A. Meyer
Keyword(s):  
United States ◽  
Hearing Loss ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
The United States ◽  
Cell Disease ◽  
Childhood Hearing Loss

scholarly journals Liver Transplantation in Patients with Sickle Cell Disease in the United States

2020 ◽  
Vol 255 ◽  
pp. 23-32 ◽  
Author(s):  
Rachel Hogen ◽  
Michelle Kim ◽  
Yelim Lee ◽  
Mary Lo ◽  
Navpreet Kaur ◽  
...  
Keyword(s):  
United States ◽  
Liver Transplantation ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
The United States ◽  
Cell Disease

scholarly journals Trends in Sickle Cell Disease–Related Mortality in the United States, 1979 to 2017

2020 ◽  
Vol 76 (3) ◽  
pp. S28-S36
Author(s):  
Amanda B. Payne ◽  
Jason M. Mehal ◽  
Christina Chapman ◽  
Dana L. Haberling ◽  
Lisa C. Richardson ◽  
...  
Keyword(s):  
United States ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
The United States ◽  
Cell Disease ◽  
Related Mortality

scholarly journals Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects

2020 ◽  
Vol 4 (16) ◽  
pp. 3804-3813
Author(s):  
Julie Kanter ◽  
Wally R. Smith ◽  
Payal C. Desai ◽  
Marsha Treadwell ◽  
Biree Andemariam ◽  
...  
Keyword(s):  
United States ◽  
Sickle Cell Disease ◽  
Access To Care ◽  
Sickle Cell ◽  
The United States ◽  
Models Of Care ◽  
System Level ◽  
Cell Disease ◽  
Blood Disorder ◽  
Essential Components

Abstract Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. It is a medically and socially complex, multisystem illness that affects individuals throughout the lifespan. Given improvements in care, most children with SCD survive into adulthood. However, access to adult sickle cell care is poor in many parts of the United States, resulting in increased acute care utilization, disjointed care delivery, and early mortality for patients. A dearth of nonmalignant hematology providers, the lack of a national SCD registry, and the absence of a centralized infrastructure to facilitate comparative quality assessment compounds these issues. As part of a workshop designed to train health care professionals in the skills necessary to establish clinical centers focused on the management of adults living with SCD, we defined an SCD center, elucidated required elements of a comprehensive adult SCD center, and discussed different models of care. There are also important economic impacts of these centers at an institutional and health system level. As more clinicians are trained in providing adult-focused SCD care, center designation will enhance the ability to undertake quality improvement and compare outcomes between SCD centers. Activities will include an assessment of the clinical effectiveness of expanded access to care, the implementation of SCD guidelines, and the efficacy of newly approved targeted medications. Details of this effort are provided.

scholarly journals Exercise Testing of Adolescents and Young Adults With Sickle Cell Disease: Perceptual Responses and the Gas Exchange Threshold

2019 ◽  
Vol 36 (5) ◽  
pp. 310-320
Author(s):  
Suzanne Ameringer ◽  
R. K. Elswick ◽  
India Sisler ◽  
Wally Smith ◽  
Thokozeni Lipato ◽  
...  
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Gas Exchange ◽  
Sickle Cell ◽  
Self Regulation ◽  
Adolescents And Young Adults ◽  
Published Data ◽  
Cell Disease ◽  
Perceived Effort ◽  
Gas Exchange Threshold

For individuals with sickle cell disease (SCD), mild to moderate exercise is advised, but self-regulation of these intensities is difficult. To regulate intensity, one SCD recommendation is to stop exercising at the first perception of fatigue. However, perceived effort and affect (how one feels) are perceptual cues that are commonly used to guide exercise intensity. This study (a) examined perceived effort, affect, and fatigue in relation to metabolic state (gas exchange) in adolescents and young adults (AYAs) with SCD, (b) explored guidelines AYAs use to self-regulate exercise, and (c) compared perceived effort and affect at gas exchange threshold (GET) with healthy counterparts. Twenty-two AYAs with SCD completed an incremental cycle test. Perceived effort, affect, and fatigue were assessed every 2 minutes. A mixed-effects linear model was conducted to model changes in effort, affect, and fatigue across time. Mean scores of effort and affect at GET were compared with published data of healthy counterparts. Participants were queried about self-regulation exercise strategies. Findings indicated that both perceived fatigue and effort at GET was lower than expected. Perceived effort was lower ( p < .0001), and perceived affect was significantly higher ( p = .0009) than healthy counterparts. Interviews revealed that most participants (95%) do not stop exercising until fatigue is moderate to severe, and many (73%) do not stop until symptoms are severe (chest tightness, blurry vision). Nurses should review guidelines for safe exercise with AYAs with SCD. Exercise training may be beneficial to AYAs with SCD for learning how to interpret bodily responses to exercise to improve self-regulation.

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