Sickle Cell Disease in Children and Adolescents: A Review of the Historical, Clinical, and Public Health Perspective of Sub‐Saharan Africa and Beyond

WI Egesa, G Nakalema, WM Waibi… - … Journal of Pediatrics, 2022 - Wiley Online Library
Sickle cell disease (SCD) is an umbrella term for a group of life‐long debilitating autosomal
recessive disorders that are caused by a single‐point mutation (Glu→ Val) that results in …

Supporting the health care transition from adolescence to adulthood in the medical home

PH White, WC Cooley, ADA Boudreau, M Cyr… - …, 2018 - publications.aap.org
Risk and vulnerability encompass many dimensions of the transition from adolescence to
adulthood. Transition from pediatric, parent-supervised health care to more independent …

Paediatric to adult transition care for patients with sickle cell disease: a global perspective

BPD Inusa, CE Stewart, S Mathurin-Charles… - The Lancet …, 2020 - thelancet.com
Sickle cell disease is a life-threatening inherited condition designated as a public health
priority by WHO. Increased longevity of patients with sickle cell disease in high-income …

[HTML][HTML] Surveillance for sickle cell disease—Sickle Cell Data Collection Program, two states, 2004–2018

AB Snyder - MMWR. Surveillance Summaries, 2022 - cdc.gov
Abstract Problem/Condition: Sickle cell disease (SCD), an inherited blood disorder affecting
an estimated 100,000 persons in the United States, is associated with multiple complications …

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

AC Saulsberry‐Abate, M Partanen… - British Journal of …, 2021 - Wiley Online Library
Neurocognitive deficits in sickle cell disease (SCD) may impair adult care engagement. We
investigated the relationship between neurocognitive functioning and socio‐environmental …

Co-designed healthcare transition interventions for adolescents and young adults with chronic conditions: a scoping review

EA Bray, B Everett, A George… - Disability and …, 2022 - Taylor & Francis
Purpose To determine the scope of published literature on healthcare transition (HCT)
interventions that have been co-designed with adolescents and young adults with chronic …

[PDF][PDF] Navigating pediatric to adult healthcare transition: a national institutes of health workshop

S Calabrese, S Lee, MA Mollica, L Wiener… - The Journal of …, 2022 - Elsevier
Conclusions The recent proliferation of efforts to address research and practice challenges
in HCT for adolescent populations has presented opportunities to revolutionize thinking and …

Perceived transition readiness among adolescents and young adults with neurofibromatosis type 1 and plexiform neurofibromas: a cross-sectional descriptive study

A Siegel, R Lockridge, KL Struemph… - Journal of Pediatric …, 2024 - academic.oup.com
Abstract Objectives Neurofibromatosis type 1 (NF1) is a genetic cancer predisposition
syndrome that can impact multiple organ systems and is associated with plexiform …

Assessing barriers and facilitators to transition in sickle cell disease care prior to implementation of a formalized program

S Sheppard, G Hellemann… - Pediatric Blood & …, 2023 - Wiley Online Library
Over 95% of children with sickle cell disease (SCD) survive into adulthood in the United
States. However, early mortality remains a problem, especially in persons between the ages …

[HTML][HTML] Survey of adult patients with vascular anomalies reveals acute need of adult hematologists-oncologists to enter the field

I Iacobas, M Singh, M Finger… - Journal of Vascular …, 2022 - journals.lww.com
Background: We have observed that adult patients with vascular anomalies often have
limited access to specialists with expertise in vascular anomalies who can coordinate their …