Objective: The objective of this topical review is to provide rationale for the development of standards of care to address the mental health needs of caregivers of youth with chronic and acute conditions.
Methods: In this topical review, we describe the relationship between pediatric medical conditions and caregiver mental health, the state of available screening and intervention options, standards of care in medicine, existing caregiver mental health standards in pediatric subspecialty populations, and exemplar caregiver mental health programs that were developed in response to standards. Finally, we will describe our rationale for this standard of care, provide a call to action, and describe anticipated challenges in developing and implementing such standards.
Background: Long Covid, characterised by persistent symptoms following the coronavirus disease 2019 (COVID-19) infection, significantly impacts the quality of life. Engaging patients in research and care through participatory methods can enhance a shared understanding of illness and improve the relevance of research.
Objective: We define Patient Experts (PEs) as persons (including patients, caregivers and providers) who have completed a series of training sessions on team building, research methods and communication at the Patient Engagement Studio, University of South Carolina (PES USC).
Background: An integral component of research within a learning health system is patient engagement at all stages of the research process. While there are well-defined best practices for engaging with patients on predetermined research questions, there is little specific methodology for engaging patients at the stage of research question formation and prioritization. Further, with an emerging disease such as Long COVID, population-specific strategies for meaningful engagement have not been characterized.
View Article and Find Full Text PDFThere is a widely recognized need for nursing faculty in the United States. To prepare a practice-ready workforce, schools of nursing are hiring faculty with Doctor of Nursing Practice (DNP) preparation to ensure clinical expertise is embedded into curriculum by practice experts. However, nurses transitioning from clinical nursing to faculty positions require tailored support and guidance in navigating the academic environment.
View Article and Find Full Text PDFThe number of children newly infected with HIV dropped by 50%, from 320 000 in 2010 to 160 000 in 2021. Despite progress, ongoing gaps persist in diagnosis, continuity of care, and treatment optimization. In response, the United States President's Emergency Plan for AIDS Relief created the Faith-based Action for Scaling-Up Testing and Treatment for Epidemic Response (FASTER).
View Article and Find Full Text PDFBackground: PTEN Hamartoma Tumor Syndrome (PHTS) is a rare genetic condition caused by germline mutations in the phosphatase and tensin homologue (PTEN) gene with a phenotype that includes macrocephaly, cancer predisposition, developmental delay, increased risk for autism spectrum disorder (ASD), and learning difficulties. Studies characterizing neurobehavioral profiles are limited.
Methods: This single-site, retrospective case series was completed in children who have PHTS followed in a cancer predisposition clinic.
Objective/background: Retinoblastoma is an ocular cancer diagnosed in early childhood. Previous research has indicated the impact of cancer treatment on sleep, but little is known about how sleep is impacted among survivors of retinoblastoma. The current study aimed to describe sleep habits of school-age survivors of retinoblastoma, to examine associations between sleep and quality of life, and to examine concordance between parent and child reports of sleep habits.
View Article and Find Full Text PDFThe application of ecological theory in urban planning is becoming more important as land managers focus on increasing biodiversity to improve human welfare in cities. Authorities must decide not only what types of biodiversity-focused infrastructure should be prioritized, but also where new resources should be positioned and existing resources protected or enhanced. Measuring the contribution of green infrastructure to landscape connectivity can maximise the successful return and conservation of urban nature.
View Article and Find Full Text PDFBackground: An estimated 21,000 children 0-14 years of age were living with HIV in Côte d'Ivoire in 2020, of whom only 49% have been diagnosed and are receiving antiretroviral therapy (ART). Retention in HIV care and treatment is key to optimize clinical outcomes. We evaluated pediatric retention in select care and treatment centers (CTCs) in Côte d'Ivoire.
View Article and Find Full Text PDFIntroduction: The potential disruption in antiretroviral therapy (ART) services in Africa at the start of the COVID-19 pandemic raised concern for increased morbidity and mortality among people living with HIV (PLHIV). We describe HIV treatment trends before and during the pandemic and interventions implemented to mitigate COVID-19 impact among countries supported by the US Centers for Disease Control and Prevention (CDC) through the President's Emergency Plan for AIDS Relief (PEPFAR).
Methods: We analysed quantitative and qualitative data reported by 10,387 PEPFAR-CDC-supported ART sites in 19 African countries between October 2019 and March 2021.
Pediatr Blood Cancer
February 2023
Background: Retinoblastoma is the most common intraocular childhood cancer and is typically diagnosed in young children. With increasing number of survivors and improved medical outcomes, long-term psychosocial impacts need to be explored. Thus, the current study sought to assess functioning in school-aged survivors of retinoblastoma.
View Article and Find Full Text PDFCatheter Cardiovasc Interv
July 2022
Objective: To assess the outcomes of a single-center experience with percutaneous left ventricular assist device (LVAD) decommissioning.
Background: Patients with LVADs may eventually require their removal, either due to recovery of left ventricular function or recurrent complications. Traditionally, withdrawal of LVAD support has been managed with surgical device explantation, which carries significant procedural risks.
Background: Globally, 11% of babies are born preterm each year. Preterm birth (PTB) is a leading cause of neonatal death and under-five mortality and morbidity, with lifelong sequelae in those who survive. PTB disproportionately impacts low/middle-income countries (LMICs) where the burden is highest.
View Article and Find Full Text PDFParents are increasingly used as donors for their child's haploidentical hematopoietic cell transplant, creating a dual role for parents that may increase the stress of caring for their ill child. Empiric research on the psychological adjustment of parental donors is lacking. We conducted a retrospective survey of parents (n = 136) whose child underwent transplant with a parental donor or a matched-unrelated donor, including both donor and nondonors, and both parents of survivors and bereaved.
View Article and Find Full Text PDFThe terrestrial, freshwater and marine realms all provide essential ecosystem services in urban environments. However, the services provided by each realm are often considered independently, which ignores the synergies between them and risks underestimating the benefits derived collectively. Greater research collaboration across these realms, and an integrated approach to management decisions can help to support urban developments and restoration projects in maintaining or enhancing ecosystem services.
View Article and Find Full Text PDFA diaryl ketone series was identified as vanin-1 inhibitors from a high-throughput screening campaign. While this novel scaffold provided valuable probe that was used to build target confidence, concerns over the ketone moiety led to the replacement of this group. The successful replacement of this moiety was achieved with pyrimidine carboxamides derived from cyclic secondary amines that were extensively characterized using biophysical and crystallographic methods as competitive inhibitors of vanin-1.
View Article and Find Full Text PDFBackground: The use of parental donors in pediatric haploidentical hematopoietic cell transplantation is increasing, but research on the psychosocial impact of parental donation is currently limited.
Objectives: As part of a larger study, we conducted a retrospective, qualitative analysis to explore parental perceptions of the donation process and the impact of being a donor (or nondonor) on parents' adjustment and coping with their child's transplant experience.
Methods: Parents/caregivers of children who underwent transplantation with a parental donor or a matched unrelated donor (N = 136) participated in interviews and completed an open-ended questionnaire.
Purpose: To describe the trajectory of cognitive and adaptive functioning in pediatric patients with retinoblastoma from diagnosis through age 10. This is an extension of a previous report that discussed findings from diagnosis through age 5.
Patients And Methods: Ninety-eight participants with retinoblastoma completed psychological assessments as part of their enrollment on an institutional treatment protocol, with 73 completing an additional assessment at age 10.
Catheter Cardiovasc Interv
November 2021
Background: LVADs provide life-sustaining treatment for patients with heart failure, but their complexity allows for complications. One complication, LVAD outflow graft obstruction, may be misdiagnosed as intraluminal thrombus, when more often it is extraluminal compression from biodebris accumulation. It can often be treated endovascularly with stenting.
View Article and Find Full Text PDFSurvivors of pediatric hematopoietic cell transplantation (HCT) are at risk for impairment in cognitive and academic function. Most research to date has focused on the first years following transplant, and less is known about the long-term effects. We examined global and specific neurocognitive functioning in long-term (>5 years post HCT) survivors in comparison to both normative data and a sample of demographically similar healthy peers.
View Article and Find Full Text PDFIncreased fructose consumption and its subsequent metabolism have been implicated in metabolic disorders such as nonalcoholic fatty liver disease and steatohepatitis (NAFLD/NASH) and insulin resistance. Ketohexokinase (KHK) converts fructose to fructose-1-phosphate (F1P) in the first step of the metabolic cascade. Herein we report the discovery of a first-in-class KHK inhibitor, PF-06835919 (), currently in phase 2 clinical trials.
View Article and Find Full Text PDFThere is growing emphasis on the potential significance of the placental microbiome and microbiome-metabolite interactions in immune responses and subsequent pregnancy outcome, especially in relation to preterm birth (PTB). This review discusses in detail the pathomechanisms of placental inflammatory responses and the resultant maternal-fetal allograft rejection in both microbial-induced and sterile conditions. It also highlights some potential placental-associated predictive markers of PTB for future investigation.
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