Transition Planning for Youth With Sickle Cell Disease: Embedding Neuropsychological Assessment Into Comprehensive Care

Wills, Karen; Nelson, Stephen C.; Hennessy, Jane M.; Nwaneri, M. Osita; Miskowiec, Joyce; McDonough, Elizabeth; Moquist, Kristin L.

doi:10.1542/peds.2010-1466j

Cited by 46 publications

(63 citation statements)

References 19 publications

(24 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Many studies have identified a need for comprehensive transition planning for SCD patients, 1,2,8,10 and some evaluate proposed models of care. 8,9,19–21 Few studies have examined facilitators and barriers in the transition process. One study identified the following threats to successful transition: beginning transition education and transition clinic after 21 years of age, having the genotype SC or Sβ+ (considered less severe forms of the disease), and not requiring chronic transfusion therapy.…”

Section: Discussionmentioning

confidence: 99%

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care

Stollon

Paine²,

Lucas³

et al. 2015

Journal of Pediatric Hematology/Oncology

View full text Add to dashboard Cite

The transition from pediatric to adult healthcare is often challenging for adolescents and young adults with sickle cell disease (SCD). Our study aimed to identify (1) measures of success for the transition to adult healthcare and (2) barriers and facilitators to this process. We interviewed 13 SCD experts and asked them about their experiences caring for adolescents and young adults with SCD. Our interview guide was developed based on Social-ecological Model of Adolescent and Young Adult Readiness to Transition framework, and interviews were coded using the constant comparative method. Our results showed that transition success was measured by healthcare utilization, quality of life, and continuation on a stable disease trajectory. We also found that barriers to transition include negative experiences in the emergency department, sociodemographic factors, and adolescent skills. Facilitators include a positive relationship with the provider, family support, and developmental maturity. Success in SCD transition is primarily determined by the patients’ quality of relationships with their parents and providers and their developmental maturity and skills. Understanding these concepts will aid in the development of future evidence-based transition care models.

show abstract

Section: Discussionmentioning

confidence: 99%

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care

Stollon

Paine²,

Lucas³

et al. 2015

Journal of Pediatric Hematology/Oncology

View full text Add to dashboard Cite

show abstract

“…In fact, between 94% and 98% of children with all genotypes of SCD are now living to the age of 18 and beyond (Quinn et al, 2010). A major challenge for these emerging adults is successfully transitioning from pediatric care to adult care (Debaun & Telfair, 2012;Hankins et al, 2012b;Wills et al, 2010). The proposed study is significant because it: 1) focuses on an underserved population that is burdened by a costly health problem and 2) fills a gap in the existing literature.…”

Section: Background and Significancementioning

confidence: 99%

Health Literacy in Adolescents With Sickle Cell Disease

Perry

Carter

Becker

et al. 2017

Journal of Pediatric Nursing

View full text Add to dashboard Cite

“…7,13,14,[16][17][18][19][20] For example, a commonly identified theme from patients is anxiety about moving from the nurturing, holistic atmosphere of pediatric care to a fragmented adult care system which may not provide access to clinicians familiar with SCD. This anxiety is exacerbated by a lack of information and guidance during the transition process, leaving several youth to believe that they were abruptly "pushed out" of their pediatric practice at a certain age rather than transitioned to an adult care provider.…”

mentioning

confidence: 99%