IJERPH, Vol. 17, Pages 2218: The Relationship between Health Disparities, Psychosocial Functioning and Health Outcomes in Pediatric Hematology-Oncology and Stem Cell Transplant Populations: Recommendations for Clinical Care

IJERPH, Vol. 17, Pages 2218: The Relationship between Health Disparities, Psychosocial Functioning and Health Outcomes in Pediatric Hematology-Oncology and Stem Cell Transplant Populations: Recommendations for Clinical Care International Journal of Environmental Research and Public Health doi: 10.3390/ijerph17072218 Authors: Isaac Meisman Drucker Violante Behrhorst Floyd Rohan Not only do racial and ethnic minority children and adolescents with chronic illness experience disparities in health status and health outcomes, they also experience significant healthcare disparities, including differences in healthcare coverage, access to care, and quality of care. It is well known that the interaction between psychosocial functioning, health behaviors and ethnic and racial disparities, ultimately leads to worse health and psychosocial outcomes in pediatric and AYA chronic illness patient populations, including increased rates of morbidity and mortality. Investigating the impact of racial and ethnic factors on health outcomes, and strategies for reducing these disparities, is of the utmost importance, specifically in life-threatening conditions like cancer and sickle cell disease. This commentary underscores the relative importance of identifying factors that could reduce disparities between minority and non-minority populations. This present paper will focus on the dynamic relationships between health disparities, psychosocial factors and health outcomes w...
Source: International Journal of Environmental Research and Public Health - Category: Environmental Health Authors: Tags: Commentary Source Type: research

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CONCLUSION: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation. PMID: 32081084 [PubMed - as supplied by publisher]
Source: Palliative Medicine - Category: Palliative Care Authors: Tags: Palliat Med Source Type: research
Discussion This case demonstrates successful cure of pre-B-ALL complicating XLA by alloSCT with restoration of B-cell development and functional antibody response. We are aware of only one previous case of pre-B-ALL in an XLA patient (21), which suggests that human BTK deficiency in itself does not predispose to pre-B-ALL. However, there are data to suggest that BTK may act as a tumor suppressor, and BTK deficiency may predispose to tumor development following a “second hit.” Mice with a genetic deficiency in Slp65, a gene encoding an adaptor protein that functions together with BTK, have a block in progenito...
Source: Frontiers in Immunology - Category: Allergy & Immunology Source Type: research
Editor's Summary by Jody Zylke, MD, Deputy Editor of JAMA, the Journal of the American Medical Association, for the January 22, 2019 issue
Source: JAMA: This Week's Audio Commentary - Category: General Medicine Authors: Source Type: podcasts
In this study we further examined these relationships.Methods: We examined self-reported barriers to HU at 0, 3 and 6 months, its association with generic and disease-specific HRQL and the impact of a community health worker (CHW) intervention on barrier reduction. Barriers were measured using the Adolescent Medication Barriers Scale3 (17 items; 3 subscales) and its parent counterpart, Parent Medication Barriers Scale (16 items; 4 sub scales); both scales were modified for HU use by adding 9 items4to capture knowledge and beliefs about HU. Barriers reported by ≥25% of the sample were considered to be common. Parent prox...
Source: Blood - Category: Hematology Authors: Tags: 903. Outcomes Research-Non-Malignant Hematology: Health Outcomes in Sickle Cell Disease and Mucopolysaccharidosis Source Type: research
ConclusionHospitalization rates are rising among most age-groups of adults with SCD. The reasons for this finding are unclear but the rising rates may reflect the fragmentation of care for SCD in adults as well as age-related increases in pain-related comorbidities and SCD complications as SCD patients live longer. However, there has been no associated increase in-hospital SCD mortality, supporting extant data which suggest that the rate of opioid-related deaths in SCD is low, and the use of opioids for pain control may be considered relatively safe in the SCD population.DisclosuresNo relevant conflicts of interest to declare.
Source: Blood - Category: Hematology Authors: Tags: 901. Health Services Research-Non-Malignant Conditions: Sickle Cell Disease Source Type: research
Sickle cell disease is a genetic blood disorder with significant morbidity and mortality. This disease is characterized by vaso-occlusive pain crisis and end-organ damage, ultimately contributing to poor quality of life and reduced life expectancy. While many advances have been made in the management of sickle cell disease, there remains room for improvement in the delivery of care for these patients.The Lifespan Academic Medical Center is the largest health care organization in the state of Rhode Island. In January of 2018, a large cohort of patients was referred to Lifespan's Cancer Institute for treatment of sickle cell...
Source: Blood - Category: Hematology Authors: Tags: 114. Hemoglobinopathies, Excluding Thalassemia-Clinical Source Type: research
Abstract Renal medullary carcinoma (RMC) is a highly aggressive malignancy that predominantly afflicts young adults and adolescents with sickle hemoglobinopathies. It is characterized by complete loss of expression of the chromatin remodeler and tumor suppressor SMARCB1. Despite therapy, the outcomes of patients with RMC remain very poor, highlighting the need to understand the etiology of this cancer, and develop new diagnostic, preventive, and therapeutic strategies. A key knowledge gap in RMC biology is why sickle hemoglobinopathies predispose to the development of this cancer. We propose a model wherein the ex...
Source: Clinical Cancer Research - Category: Cancer & Oncology Authors: Tags: Clin Cancer Res Source Type: research
Renal medullary carcinoma is a rare kidney cancer that is primarily seen in adolescent and young adult African American patients with sickle cell trait. Prognosis is poor and treatment options are limited. We have developed several cell line models that recapitulate the primary and relapsed metastatic samples from a patient who succumbed to this disease. We have confirmed by whole exome sequencing that our models have sickle cell trait and loss of heterozygosity of the SMARCB1 loci, both hallmarks of this disease. By RNA-sequencing, we see a lack of SMARCB1 transcription. We have further shown dependency of our models to S...
Source: Molecular Cancer Therapeutics - Category: Cancer & Oncology Authors: Tags: Finding Synthetic Lethal Interactions through Functional Genomics: Poster Presentations - Proffered Abstracts Source Type: research
ConclusionsBiological parenthood was important to this cohort yet fertility and reproductive health knowledge was low, suggesting that clinicians should prioritize conversations about infertility risk and birth control options with AYA with SCD on hydroxyurea and their caregivers.  More research is needed to identify optimal approaches to these discussions.
Source: Pediatric Blood and Cancer - Category: Cancer & Oncology Authors: Tags: RESEARCH ARTICLE Source Type: research
This study evaluated the ability of the PROMIS Pediatric measures to detect change over time in children and adolescents with cancer, nephrotic syndrome (NS), or sickle cell disease (SCD).MethodsParticipants (8 –17 years) completed measures of fatigue, pain interference, anger, anxiety, depressive symptoms, mobility, upper extremity, and peer relationships at three or four time points (T1–T4). Between T1 and T2, children with cancer received chemotherapy and children with SCD experienced a pain exacer bation. Children with NS were first assessed during active disease (T2), with T3 and T4 conducted at disea...
Source: Quality of Life Research - Category: Health Management Source Type: research
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