A5066074452- Childhood Cancer Survivors' Quality of Life
- Pituitary Gland Disorders and Treatments
- BRCA gene mutations in cancer
- Sleep and Wakefulness Research
- Prenatal Screening and Diagnostics
- Ethics and Legal Issues in Pediatric Healthcare
- Growth Hormone and Insulin-like Growth Factors
- Glioma Diagnosis and Treatment
- Ethics in medical practice
- Patient Dignity and Privacy
- Hemoglobinopathies and Related Disorders
- Sleep and related disorders
- Folate and B Vitamins Research
- Nutrition and Health in Aging
- Iron Metabolism and Disorders
- Genetics and Neurodevelopmental Disorders
- CRISPR and Genetic Engineering
- Ethics in Business and Education
- Palliative Care and End-of-Life Issues
- Family Support in Illness
St. Jude Children's Research Hospital
2019-2025
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....
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...
Objective: The aim of this study was to describe fatigue, health-related quality life (HRQOL) and brain tumor-associated symptoms after surgical resection during proton radiotherapy, using latent class analysis (LCA), determine if there is membership change among pediatric patients with craniopharyngioma. Methods: For all (n = 92), demographic disease-related/clinical variables were attained, patient reported outcomes collected prior therapy, at week three, the completion therapy. mean...
Youth with craniopharyngioma are at increased risk for excessive daytime sleepiness and narcolepsy. Polysomnography (PSG) is the gold standard diagnosing sleep disorders, but time-intensive, costly, does not offer an in vivo measure of typical routine. We determined sensitivity, specificity, accuracy actigraphy compared PSG measuring nocturnal pediatric craniopharyngioma.Fifty youth (age 3-20 years) were assessed by overnight concurrent after surgical resection before proton therapy.PSG data...
To examine the impact of clinical factors, cognitive deficits, and sleepiness on health-related quality life (HRQoL) among young people with craniopharyngioma.Seventy-eight patients (67% White; 41 males, 37 females; mean age 10y 8mo, SD 3y 11mo, range 6-20y) craniopharyngioma were assessed for tumor extent diabetes insipidus. All underwent overnight polysomnography multiple sleep latency tests after surgical resection. Executive functioning was using parent-reported measures. Patients their...
Clinical genomic testing is increasingly being used to direct pediatric cancer care. Many centers are interested in offering of tumors and paired germline tissues at or near the time diagnosis. We conducted this study better understand parent preferences surrounding timing content consent conversations for clinical genetic their children with as a part real-time care.A seven-question survey developed by Division Cancer Predisposition collaborators St Jude Children's Research Hospital (St...
Abstract Presentation Date: 6/9/2024 Start Time: 3:30:00 PM Background Researchers and clinicians are enthusiastic about genetic therapies for patients with sickle cell disease (SCD). Despite the potential to be curative, these treatments remain high-risk interventions. Furthermore, health care disparities systematic racism further complicate knowledge attitudes around novel research disease. Hopeful gene therapy may interest patients, but relationship between participant trust genomic is...
Patients with craniopharyngioma experience hypothalamic dysfunction, excessive weight gain, disrupted sleep, daytime sleepiness (EDS), fatigue, and greater social-emotional impairments that negatively impact health-related quality of life (HRQoL). Extent tumor involvement (HI) has been shown to be associated higher rates these in this population. Direct indirect effects relations have yet investigated; our goal was examine between HI, body mass index (BMI), sleep disruptions, EDS,...
Abstract Introduction Craniopharyngioma is a non-malignant tumor that arises in the suprasellar region of intracranial compartment. Hypothalamic dysfunction common and associated with diabetes insipidus, hormone deficiencies, neurocognitive impairment, sleep disturbance, obesity, decreased health-related quality life. Patients craniopharyngioma commonly have excessive daytime sleepiness, are often diagnosed narcolepsy without cataplexy even obstructive apnea (OSA). This study examined change...
Genomic testing is becoming increasingly common in the care of pediatric patients with cancer. Parental understanding germline results and their intent timing disclosure to child family may have significant implications on unit. The purpose this study was examine parental genomic plans for other relatives. Semi-structured interviews were conducted 64 parents children cancer, approximately eight weeks after had received child's results. Parents negative (n = 20), positive 15), or variants...
Craniopharyngioma is a low-grade embryogenic malformation in the suprasellar region that often extends to involve hypothalamus. Structural abnormalities associated with tumor may induce hypersomnolence, including both narcolepsy and hypersomnia due medical condition. This study first describe sleep disturbances among children newly diagnosed craniopharyngioma patient, disease, treatment variables. 110 were enrolled an institutional phase II trial of either limited surgical resection followed...
Craniopharyngioma is a rare brain tumor located in the suprasellar region that often extends to hypothalamus. Given this location, children who undergo resection are at greater risk for excessive daytime sleepiness (EDS) interferes with psychosocial function, academic performance and quality of life. Polysomnography (PSG) Multiple Sleep Latency Tests (MSLT) gold standards diagnosing sleep disorders. When monitoring response treatment, however, they time-intensive, costly, do not offer an...
Abstract Introduction Patients with craniopharyngioma are at increased risk for hypersomnia/narcolepsy and circadian rhythm disruption, secondary to hypothalamic-pituitary involvement of the tumor. We assessed youth determine presence dim light melatonin onset (DLMO) concurrent sleep disturbance. Methods Fifty-two patients (7-21 years; 51% female) enrolled on our institutional protocol that included surgery, proton therapy, or both. In-home salivary was collected after surgery hourly...
Abstract Purpose The aim of this study was to describe fatigue, health related quality life (HRQOL) and brain tumor associated symptoms after surgical resection during proton radiotherapy, using latent class analysis (LCA), determine if there is membership change among pediatric patients with craniopharyngioma. Methods For all (n = 92), demographic disease-related/clinical variables were attained, patient reported outcomes collected prior therapy, week three, at the completion therapy. Mean...