Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role

Porter, Jerlym S.; Graff, J. Carolyn; Lopez, Alana D.; Hankins, Jane S.

doi:10.1016/j.pedn.2013.10.002

Cited by 38 publications

(45 citation statements)

References 21 publications

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“…Though small, a sample size of 30 is consistent with sample sizes reported in other published pediatric SCD studies conducted at a single site that have guided the development of interventions (Patterson et al, 2014; Porter, Graff, Lopez, & Hankins, 2014; Sobota et al, 2014). However, due to the small sample size, predictors, mediators or moderators of school performance that may be important in understanding the current or future educational/vocational outcomes in this population could not be examined.…”

Section: Discussionsupporting

confidence: 73%

School Performance and Disease Interference in Adolescents with Sickle Cell Disease

Crosby

Joffe

Irwin

et al. 2015

PDERS

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Sickle cell disease (SCD) results in neuropsychological complications that place adolescents at higher risk for limited educational achievement. A first step to developing effective educational interventions is to understand the impact of SCD on school performance. The current study assessed perceptions of school performance, SCD interference and acceptability of educational support strategies in adolescents with SCD. To identify potential risk factors, the relationship between school performance, SCD interference and demographics were also examined. Thirty adolescents aged 12 to 20 completed demographics and SCD school performance questionnaires. Approximately 37% of participants reported receiving special education services, but more than 60% reported that SCD interfered with their school performance. Females reported that SCD impacted their schooling more than males (X2 (1, N = 30) = 5.00, p < .05). Study findings provide important insights into demographic risk factors and support the need for individualized health and educational plans for adolescents with SCD.

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Section: Discussionsupporting

confidence: 73%

School Performance and Disease Interference in Adolescents with Sickle Cell Disease

Crosby

Joffe

Irwin

et al. 2015

PDERS

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“…Adolescents with chronic conditions have expressed fears and concerns about self-managing their illnesses, "feeling unprepared" as they grow into adulthood. 27,28 To address adolescents' health concerns, it is recommended that health care providers discuss benefits of self-management to improve their continuum of care. 28,29 Adolescent medication selfmanagement and potential inappropriate use is a patient safety concern as children take on more disease management responsibility and adherence is known to significantly decrease.…”

Section: Discussionmentioning

confidence: 99%

Pediatric medication use experiences and patient counseling in community pharmacies: Perspectives of children and parents

Abraham¹,

Amanda²,

Alexander³

et al. 2017

Journal of the American Pharmacists Association

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“…7,34 The difficulties surrounding transitions of care are complex as well as well researched and discussed. [35][36][37][38][39][40][41] As a result of the complexities surrounding the successful transition of a marginalized population from the family-directed pediatric medical home to fragmented and patient-directed adult services, there is a higher rate of morbidity in late adolescents and young adults with SCD. 42 It has been shown that the highest rate of acute care encounters and rehospitalizations is in those 18-30 years old and not in older patients, as one would expect if the cause were increasing disease morbidity and age.…”

Section: Disease Experiencementioning

confidence: 99%

Palliative Care Teams as Advocates for Adults with Sickle Cell Disease

Ajayi

Edmonds

Thornberry

et al. 2016

Journal of Palliative Medicine

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Medical advances have improved the overall life expectancy of patients with sickle cell disease (SCD). Unfortunately, the quality of life for patients with SCD remains a struggle. As the goal of palliative care (PC) is to improve quality of life for patients with serious illnesses, many PC teams are now asked to be involved in the care of these patients and may have variable levels of experience with SCD. Caring for patients with SCD is a complex and difficult task that often causes a reflexive "groan" from health care providers, which usually signifies a negative health care provider attitude stemmed from feeling uncomfortable in treating this complex patient population. It is important to be aware of these implicit biases and to overcome these feelings by becoming more familiar with the lives and experiences of those with SCD. This report provides an overview of SCD, context for the complexity of caring for this patient population, and areas for partnering in care.

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Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role

Cited by 38 publications

References 21 publications

School Performance and Disease Interference in Adolescents with Sickle Cell Disease

School Performance and Disease Interference in Adolescents with Sickle Cell Disease

Pediatric medication use experiences and patient counseling in community pharmacies: Perspectives of children and parents

Palliative Care Teams as Advocates for Adults with Sickle Cell Disease

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