A5030276741- Hemoglobinopathies and Related Disorders
- Adolescent and Pediatric Healthcare
- Iron Metabolism and Disorders
- Childhood Cancer Survivors' Quality of Life
- Prenatal Screening and Diagnostics
- HIV/AIDS Research and Interventions
- Healthcare Policy and Management
- Food Security and Health in Diverse Populations
- Eating Disorders and Behaviors
- Pharmacological Effects and Toxicity Studies
- Obesity, Physical Activity, Diet
- LGBTQ Health, Identity, and Policy
- Neonatal Health and Biochemistry
- Obesity and Health Practices
- Blood groups and transfusion
- Cancer-related cognitive impairment studies
- Cancer survivorship and care
- Epigenetics and DNA Methylation
- Child and Adolescent Health
- Homelessness and Social Issues
- Autoimmune and Inflammatory Disorders Research
- Resilience and Mental Health
- Digital Mental Health Interventions
- Religion, Spirituality, and Psychology
- Cannabis and Cannabinoid Research
St. Jude Children's Research Hospital
2015-2025
Alder Hey Children's NHS Foundation Trust
2023
University of Pittsburgh
2023
Northwestern University
2010
Virginia Commonwealth University
2006-2008
<h3>Importance</h3> There is a lack of agreement on what constitutes successful outcomes for the process health care transition (HCT) among adolescent and young adults with special needs. <h3>Objective</h3> To present HCT identified by Delphi an interdisciplinary group participants. <h3>Design, Setting, Participants</h3> A method involving 3 stages was deployed to refine list outcomes. This 18-month study (from January 5, 2013, stage 1 July 3, 2014, 3) included initial literature search,...
Previous natural history studies have advanced the understanding of sickle cell disease (SCD), but generally not included sufficient lifespan data or investigation role genetics in clinical outcomes, and often occurred before widespread use disease-modifying therapies, such as hydroxyurea chronic erythrocyte transfusions. To further advance knowledge SCD, St. Jude Children's Research Hospital established Sickle Cell Clinical Intervention Program (SCCRIP), to conduct research a clinically...
Sickle cell disease (SCD) is an inherited blood disorder causing acute complications and chronic progressive end organ damage. SCD associated with significant morbidity, early mortality, impaired health-related quality of life, increased health care utilization. Hydroxyurea a US Food Drug Administration-approved medication that reduces complications, utilization, costs. However, adherence to hydroxyurea suboptimal. Mobile (mHealth) interventions have the potential improve adherence, but few...
Summary Neurocognitive impairment is common in sickle cell disease (SCD) and associated with significant functional limitations. In a cross‐sectional analysis, we examined the association between hydroxyurea (HU) treatment neurocognitive functioning from school‐age to young adulthood individuals SCD. A total of 215 patients HbSS/HbSβ 0 ‐thalassaemia (71% HU treated) 149 HbSC/HbSβ + (20% completed measures at one four developmental stages: (age 8–9 years), early adolescence 12–13 late 16–17...
Objective To examine gender and ethnic differences in psychosocial functioning among 100 (78% African American 59% girls) treatment-seeking overweight 11-to 18-year-old adolescents.Self-esteem was examined as a potential mediator of the association between weight-related teasing quality life (QOL).Methods Adolescents completed measures evaluating self-esteem, dietary habits, teasing, QOL.Results Few racial or were found.Mean QOL similar to that reported another study examining adolescents...
Summary Patients with sickle cell disease (SCD) are at increased risk for neurocognitive impairments. While disease‐modifying treatment, such as hydroxycarbamide (hydroxyurea), may decrease this risk, it has not been systematically investigated in children SCD. We screened functioning 103 adolescents SCD (16–17 years, 50% female) and compared outcomes between patients a history of exposure to ( n = 12 HbSC/HbSβ + thalassaemia; 52 HbSS/HbSβ 0 thalassaemia) those never treated 31 8...
Abstract Hydroxyurea is an efficacious treatment for sickle cell disease (SCD), but adoption low among individuals with SCD. The objective of this study was to examine barriers patients’ adherence hydroxyurea use regimens by using the intentional and unintentional medication nonadherence framework. We interviewed SCD age 15 49.9 years who were participants in Sickle Cell Disease Implementation Consortium (SCDIC) Needs Assessment. framework explains adds granularity understanding unique...
Guidelines recommend transfer to adult health care within 6 months of completing pediatric care; however, this has not been studied in sickle cell disease (SCD). We hypothesized that longer gaps are associated with increased resource utilization. Transfer were defined as the time between last and first visits. estimated association varying rates inpatient, emergency department (ED), outpatient visits, using negative binomial regression. Health utilization was evaluated a mid-south...
OBJECTIVE In the United States, physicians and residents report inadequate training in managing adolescents young adults (AYAs) during transition from pediatric to adult care, particularly AYAs with chronic illnesses such as sickle cell disease (SCD). We developed an intervention where medical students serve similar-aged “peer” mentors offer informational developmentally appropriate support AYA patients period of transition. Our initial work showed feasibility acceptability this for SCD....
Introduction Sickle cell disease (SCD) is a monogenic blood disorder characterized by neurodevelopmental delays. Most children with SCD do not receive developmental services due in part to disparities care access. To inform the design of intervention for SCD, we evaluated factors that influence access services. Methods Interview data were collected from educational and medical providers ( n = 15) caregivers aged 4–6 years at single center surrounding area. Caregivers completed questionnaires...
The aim of this study was to explore perspectives transition and readiness young adult patients (YAs) with sickle cell disease (SCD) who have transitioned health care.In all, 19 YAs SCD (ages 18-30 years) participated in one three focus groups completed a brief questionnaire about topics. Transcripts were coded emergent themes examined using the social-ecological model adolescent for (SMART).Themes consistent most SMART components. Adult provider relationships negative medical experiences...
Individuals with sickle cell disease (SCD) experience neurocognitive decline, low medication adherence, increased unemployment, and difficulty instrumental activities of daily living (IADL). The relationship between self-perceived cognitive difficulties IADLs, including employment, school enrollment, independence, engagement in leisure activities, adherence is unknown. We hypothesized that self-reported across areas would predict lower IADL skills. Adolescent adult participants the...
This article addresses the origins, mechanisms, and expressions of prejudice. A selective review research finds strong support for validity G. W. Allport's (1954) contact hypothesis conditions in reducing Methodological advances study prejudice are reviewed, implications findings counselors explored.