A5002807024- Childhood Cancer Survivors' Quality of Life
- Ethics and Legal Issues in Pediatric Healthcare
- Palliative Care and End-of-Life Issues
- Genomics and Rare Diseases
- Cancer Genomics and Diagnostics
- Ethics in medical practice
- Ethics in Clinical Research
- BRCA gene mutations in cancer
- Genetic factors in colorectal cancer
- Biomedical Ethics and Regulation
- RNA modifications and cancer
- Pharmaceutical studies and practices
- Patient Dignity and Privacy
- Prenatal Screening and Diagnostics
- Child and Adolescent Health
- Family and Patient Care in Intensive Care Units
- Intensive Care Unit Cognitive Disorders
- Family Support in Illness
- Health Systems, Economic Evaluations, Quality of Life
- Neuroblastoma Research and Treatments
- Healthcare Decision-Making and Restraints
- Cancer survivorship and care
- Hemoglobinopathies and Related Disorders
- Pediatric Pain Management Techniques
- Adolescent and Pediatric Healthcare
St. Jude Children's Research Hospital
2016-2025
Dana-Farber/Boston Children's Cancer and Blood Disorders Center
2022
Vanderbilt University Medical Center
2022
Sheffield Health and Social Care NHS Foundation Trust
2020
Children's Research Hospital
2018
Texas A&M Health Science Center
2015
Catholic Charities
2015
Duke University
2015
University of North Carolina at Chapel Hill
2015
Health First
2015
Genomic studies of pediatric cancer have primarily focused on specific tumor types or high-risk disease. Here, we used a three-platform sequencing approach, including whole-genome (WGS), whole-exome (WES), and RNA (RNA-seq), to examine germline genomes from 309 prospectively identified children with newly diagnosed (85%) relapsed/refractory (15%) cancers, unselected for type. Eighty-six percent patients harbored diagnostic (53%), prognostic (57%), therapeutically relevant (25%), and/or...
There is little information about the content of ethics consultations (EC) in pediatrics. We sought to describe reasons for consultation and ethical principles addressed during EC pediatrics through retrospective review directed analysis records (2000–2011) at St. Jude Children's Research Hospital. Patient-based were highly complex often involved evaluation parental decision making, particularly consideration risks benefits a proposed medical intervention, physician's fiduciary...
Abstract Background The field of pediatric palliative oncology is newly emerging. Little known about the characteristics and illness experiences children with cancer who receive care (PC). Methods A retrospective cohort study 321 patients enrolled in PC died between 2011 2015 was conducted at a large academic center using comprehensive standardized data extraction tool. Results majority received experimental therapy (79.4%), 40.5% on phase I trial. Approximately one‐third cancer‐directed...
The incorporation of genomic testing to identify targetable somatic alterations and predisposing germline mutations into the clinical setting is becoming increasingly more common. Despite its potential usefulness, authors' knowledge physician confidence with regard understanding applying remains unclear, particularly within realm pediatric oncology.Before initiating an institutional feasibility study regarding integration testing, authors surveyed oncologists their around perceived...
ABSTRACT Purpose To assess the level of moral distress (MD) and perceptions ethical climate among pediatric hematology/oncology (PHO) nurses to identify bioethics topics where increased education was desired. Methods In this cross‐sectional study, we administered 26‐item Swedish Moral Distress Scale‐Revised (sMDS‐R), specifically revised validated for oncology, in conjunction with Clinical Ethics Needs Assessment Survey (CENAS). Electronic surveys were sent inpatient outpatient PHO nurses....
People with severe sickle cell disease (SCD) are now presented increasing access to curative-intent therapies including allogeneic hematopoietic stem transplantation (HCT) and gene therapy (GT). These high-risk, high-reward offer hope for cure prevention of further injury due SCD, but they toxic that carry risk additional morbidity mortality. SCD suffer extreme pain serious multi-system which is compounded by the effects systemic racism. The availability these complex, sometimes novel,...
The use of propofol for palliative sedation children is not well documented.Here we describe our experience with the therapy (PST) to alleviate intractable end-of-life suffering in three pediatric oncology patients, and propose an algorithm selection such candidates PST.We identified inpatients who had received PST within 20 days death at institution between 2003 2010. Their medical records were reviewed indicators pain, suffering, from 48 hours before time death. We also tabulated...
Background: The demonstrated benefit of integrating palliative care (PC) into cancer treatment has triggered an increased need for PC services. trajectory in comprehensive centers, particularly pediatric is unknown. We describe our 8-year experience initiating and establishing with the Quality Life Service (QoLS) at St. Jude Children's Research Hospital. Methods: retrospectively reviewed records patients seen by QoLS (n=615) from March 2007 to December 2014. Variables analyzed each year,...
Background High‐quality oncology care is marked by skillful communication, yet little known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric parent of early cancer establish whether informational needs were met identify opportunities for enhanced throughout care. Method An original survey instrument was developed, pretested, administered 129 patients, age 10‐18 years, their parents at 3 centers between 2011 2015. Statistical...
Background: Racial and ethnic disparities in the provision of end-of-life care are well described adult oncology literature. However, impact racial at end life context pediatric remains poorly understood. Objective: To investigate associations between experiences race/ethnicity for patients with cancer. Methods: A retrospective cohort study was conducted on 321 children cancer enrolled a palliative service an urban who died 2011 2015. Results: Compared to white patients, black were more...
BACKGROUND It can be difficult to explain pediatric phase 1 oncology trials families of children with refractory cancer. Parents may misunderstand the information presented them, and physicians assume that certain topics are covered in informed consent document need not discussed. Communication models help ensure effective discussions. METHODS Suggestions for improving process were first solicited from study clinicians via questionnaire. Eight parents who had enrolled their child on a trial...
End-of-life care (EOLC) discussions and treatment-related decisions, including phase 1 trial enrollment, in patients with incurable disease are complex can influence the quality of EOLC received. The current study was conducted pediatric oncology to determine whether end-of-life characteristics differed between those who were not enrolled a trial.The authors reviewed medical records 380 (aged <22 years at time death) died during 3.5-year period. Of these, 103 hematologic malignancies...
Abstract Background In the U.S., more children die from cancer than any other disease, and one third in hospital setting. These data have been replicated even subpopulations of with enrolled on a palliative care service. Children who high-acuity inpatient settings often experience suffering at end life, increased psychosocial morbidities seen their bereaved parents. Strategies to preemptively identify are likely not explored. Materials Methods A standardized tool was used gather demographic,...
Patients with cancer are increasingly offered genomic sequencing, including germline testing for predisposition or other disorders. Such is unfamiliar to patients and families, clear communication needed introduce concepts convey risk benefit information.Parents of children were the opportunity have their children's tumor examined clinical sequencing. Families introduced study a 2-visit informed consent model. Baseline genetic knowledge self-reported literacy/numeracy collected before...
In resource-rich countries, 5-year survival rates for children with cancer approach 85%. This impressive statistic is largely the result of integrating research clinical care. At core this endeavor are multiagent combination chemotherapy and supportive care agents (CASCA). Most CASCAs belong to class sterile injectable drugs, which make up backbone many proven life-saving pediatric oncology regimens. There few if any alternative available treat most life-threatening childhood cancers. United...
PURPOSE For the advances of pediatric oncology next-generation sequencing (NGS) research to equitably benefit all children, a diverse and representative sample participants is needed. However, little known about demographic clinical characteristics that differentiate families who decline enrollment in NGS research. METHODS Demographic data were retrospectively extracted for 363 patients (0-21 years) with cancer approached Genomes Kids (G4K), study examining feasibility comprehensive genomic...
Abstract Background Sickle cell disease (SCD) is an inherited blood disorder that results in serious morbidity and early mortality. Novel therapies for SCD, most notably genetic (GTs) HLA‐mismatched donor hematopoietic transplantation, are clinical trials. While potentially curative, these interventions some of the intensive treatments SCD associated with life‐altering side effects, which may manifest several years after treatment. Little known about knowledge, beliefs, attitudes individuals...
Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until end. Sometimes, however, only way relieve sedate they are unconscious. This method has been called palliative sedation therapy. Palliative therapy controversial because it misunderstood as euthanasia. We present a case which an adolescent who dying of leukemia intractable pain. Experts oncology, ethics, management, care discuss trade-offs associated with different...