scholarly journals Beyond the transition of adolescents and young adults with sickle cell disease to adult care: Role of geography

2017 ◽  
Vol 92 (6) ◽  
pp. E110-E112 ◽  
Author(s):  
Nina Anderson ◽  
James R. Eckman ◽  
Samir K. Ballas
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Adolescents And Young Adults ◽  
Cell Disease ◽  
Adult Care

Outcome of Transitioning Pediatric Patients with Sickle Cell Disease to Adult Programs.

Blood ◽  
2004 ◽  
Vol 104 (11) ◽  
pp. 3743-3743 ◽  
Author(s):  
Samir K. Ballas ◽  
Carlton Dampier
Keyword(s):  
Chronic Pain ◽  
Young Adults ◽  
Pain Management ◽  
Sickle Cell Disease ◽  
Medical Care ◽  
Sickle Cell ◽  
Adolescents And Young Adults ◽  
Cell Disease ◽  
Adult Care ◽  
Female Ratio

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

scholarly journals Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease

2017 ◽  
Vol 42 (9) ◽  
pp. 1016-1027 ◽  
Author(s):  
Jerlym S. Porter ◽  
Kimberly M. Wesley ◽  
Mimi S. Zhao ◽  
Rebecca J. Rupff ◽  
Jane S. Hankins
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Care Transition ◽  
Cell Disease ◽  
Adult Care

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.

scholarly journals Measuring Transition Readiness in Adolescents and Young Adults with Sickle Cell Disease Using the Transition Readiness Assessment Questionnaire

2021 ◽  
Author(s):  
Anjali Oberoi ◽  
Alyssa Patterson ◽  
Amy Sobota
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Medical Center ◽  
Self Report ◽  
Adolescents And Young Adults ◽  
Cell Disease ◽  
Readiness Assessment ◽  
Transition Readiness ◽  
Assessment Questionnaire

Background/Objectives: Adolescents and young adults (AYA) with sickle cell disease (SCD) face challenges related to the disease and its treatment. The Transition Readiness Assessment Questionnaire (TRAQ) is a self-report tool for assessing transition readiness for youth with special health care needs (YSHCN), including SCD. This study uses the TRAQ to understand transition readiness in patients with SCD treated at the Boston Medical Center, evaluates associations between TRAQ scores and transition outcomes (e.g., EDr, EDu), and compares TRAQ scores in this population with other YSHCN. Methods: We reviewed electronic medical records of AYA with SCD who completed the TRAQ in the pediatric hematology clinic between January 1, 2019, and March 1, 2020, and categorized healthcare encounters to calculate EDu and EDr. We used t-tests and ANOVA models to analyze mean TRAQ scores, sex, age, genotype, EDu, and EDr. Results: The sample was 45 AYA patients with SCD between 13 and 22 years old. The mean TRAQ score for the overall patient sample was 3.67. Mean TRAQ scores did not significantly vary by sex or genotype but did significantly increase with age. TRAQ scores were lower in the SCD population than in other YSHCN. TRAQ scores did not correlate to EDu or EDr. Conclusions: AYA patients with SCD have lower transition readiness than other populations of YSHCN. The age of 18 may not be the most reliable attribute of readiness, though older patients do have higher readiness. The relationship between TRAQ scores, EDr, and EDu is not clear and requires further evaluation.

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