Literature Review
All posts tagged with “Clinical News | Pediatric News.”
$4.25 million gene therapy for kids becomes world's priciest drug
03/22/24 at 03:00 AM$4.25 million gene therapy for kids becomes world's priciest drug NBC LEX18, by Alex Arger; 3/20/24 A lifesaving gene therapy for children born with a rare and debilitating disease has just been approved by the U.S. Food and Drug Administration. The catch? Its wholesale cost has been set at $4.25 million, making it the most expensive medicine in the world. Orchard Therapeutics announced the hefty price for Lenmeldy Wednesday, two days after the FDA approved the therapy as the only treatment for kids with metachromatic leukodystrophy, or MLD.
Lubbock author publishes "I'm on Hospice: A Children's Book"
03/20/24 at 02:00 AMLubbock author publishes "I'm on Hospice: A Children's Book for Processing & Coping With a Terminal Illness" CBS WDTV 5; book is by Sydney Crane (author) and Nina Broen (illustrator); tv interview 3/14/24While a child is in the care of a hospice team, they will likely hear words and phrases that they do not know or have questions they are unsure how to ask. Presenting information through Riley's story, I'm On Hospice encourages conversations and facilitates a space for questions, discussion, and understanding within any relationship dynamic surrounding a terminally ill child. Riley is a nine-year-old boy whose life purpose is all about baseball, and he shares how each of his hospice caretakers helps him be comfortable and safe.Editor's Note: This book is available on Amazon and Kindle. The description above is from Amazon, as the tv interview is video.
Antidepressant prescribing practices of pediatric palliative care providers
03/14/24 at 03:00 AMAntidepressant prescribing practices of pediatric palliative care providers Journal of Palliative Medicine, by Teresa Venta; 3/12/24 Objective: This study seeks to describe the antidepressant prescribing practices of PPC providers and describe their level of training and comfort in assessing for anxiety and depression and prescribing psychotropic medications. Conclusions: Limited training in assessing mental health concerns, prescribing, and managing psychopharmacology suggests an opportunity for more targeted education for pediatric PC providers regarding antidepressant prescribing practices.
CT bill would create a statewide pediatric hospice program: 'Make this a reality for our children'
03/12/24 at 03:00 AMCT bill would create a statewide pediatric hospice program: 'Make this a reality for our children' The Darien Times, by Cris Villalonga-Vivoni; 3/11/24There are only a handful of agencies specifically providing end-of-life care to children in the state, said Moss, who is also the founder of Connecticut Children’s Hospital palliative care team, the Sunflower Kids. “Every dying child in the state of Connecticut deserves this expertise and support of the hospice program,” Moss said. “It is time we make this a reality for our children.” The need for pediatric hospice care is felt throughout the state, even if the volume of people seeking out these services is often low, said Tracy Wodatch, president and chief executive officer of the Connecticut Association for Healthcare at Home.
How changing reproductive health laws could impact perinatal hospice
03/12/24 at 02:30 AMHow changing reproductive health laws could impact perinatal hospice Hospice News, by Holly Vossel; 3/8/24 Evolutions in reproductive health laws may have reverberating impacts on the demand and delivery of perinatal hospice care. Perinatal hospice care is provided to families choosing to continue a pregnancy following a life-limiting prenatal diagnosis indicating a high risk of mortality before or shortly after birth. This care includes emotional, spiritual and medical support to families navigating the complexities of a terminal illness. Perinatal hospice providers work closely with health care professionals in neonatal intensive care units (NICU) and reproductive health settings.
Programmatic palliative care consultations in pediatric heart transplant evaluations
03/11/24 at 03:00 AMProgrammatic palliative care consultations in pediatric heart transplant evaluations Pediatr Cardiol, by Erika J Mejia, Rui Xiao, Jennifer K Walter, Chris Feudtner, Kimberly Y Lin, Aaron G DeWitt, Meeta Prasad Kerlin; 3/8/24 Guidelines advocate for integrating palliative care into the management of heart failure (HF) and of children with life-limiting disease. The potential impact of palliative care integration into pediatric HF on patient-centered outcomes is poorly understood. The present study sought to assess the association of programmatic implementation of palliative care into the heart transplant evaluation process with hospital-free days (HFD) and end of life (EOL) treatment choices.
Charity Spotlight: Ryan House and Executive Director Tracy Leonard-Warner
03/07/24 at 03:00 AMCharity Spotlight: Ryan House and Executive Director Tracy Leonard-Warner Fiesta Bowl - Charity Stories, by Theresa Palmquist; 3/5/24 Every year, the Fiesta Bowl Organization provides financial support to nonprofits across the state in an effort to enhance and elevate the lives of Arizona's youth. In its latest grant cycle, Fiesta Bowl Charities granted $25,000 to the Sponsor-A-Stay fund at Ryan House, a nonprofit pediatric-focused facility that provides respite, palliative and end-of-life care for patients with life-limiting and life-threatening diagnoses. ... It is only one of three facilities like its kind in the United States and is modeled after Helen-House in the United Kingdom, which has more than 50 pediatric respite, palliative and hospice care houses.
Perceptions of interprofessional practitioners regarding pediatric palliative transports
03/04/24 at 03:00 AMPerceptions of interprofessional practitioners regarding pediatric palliative transports Am J Crit Care; by Harriett Swasey, Diana Morrill, Sandra Mott, Shannon Engstrand, and Jean Anne Connor; 3/1/24 Background: Pediatric palliative transport (PPT) is the practice of offering critically and terminally ill children requiring life-sustaining measures the opportunity to be discharged from the hospital to home or a hospice facility for end-of-life care. Although studies have shown PPT to favorably affect both children and their families, limited research exists on the perspectives of health care practitioners.
Experiences of nursing students providing end of life care for children and young people: A focus group study
02/29/24 at 03:00 AMExperiences of nursing students providing end of life care for children and young people: A focus group study Elsevier, by Clair Camara, Leah Rosengarten and Jane Callum; 2/27/24This study aims to help improve understanding of the lived experiences of children's nursing students who have cared for a patient at, during, or immediately following end-of-life. The study describes the emotions experienced by children's nursing students and explores the student nurses' perceptions of education and support needs around caring for [Children and Young People] CYP during end-of-life care.
More than $37,700 raised to fund grief and loss support for children in SWFL
02/27/24 at 03:00 AMMore than $37,700 raised to fund grief and loss support for children in SWFL Avow Foundation Press Reslease; 2/26/24Avow [Hospice] raised funds throughout January as part of a matching gift campaign with St. John’s Episcopal Church, resulting in more than $37,700 donated in support of the Avow Kids program. St. John’s Episcopal Church pledged to match dollar-for-dollar up to $17,350 for children’s grief and loss support, a goal Avow achieved well before the end of the month.
Trends in pediatric palliative care research: February 2024 list
02/27/24 at 02:00 AMTrends in Pediatric Palliative Care Research: February 2024 ListPedPalASCNET, editor Hal Siden, MD, MHSc, FRCPC; email; 2/26/24PedPalASCNET: A network for accessible, sustainable, and collaborative research in pediatric palliative care. Trends in Pediatric Palliative Care Research, 2024, Issue 01.
The role of bioethics services in paediatric intensive care units: A qualitative descriptive study
02/20/24 at 03:00 AMThe role of bioethics services in paediatric intensive care units: A qualitative descriptive studyBMC Medical Ethics, by Denise Alexander, Mary Quirke, Jo Greene, Lorna Cassidy, Carol Hilliard, and Maria Brenner; 2/19/24Results: From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork.
'A blessing': Sarasota family shares importance of hospice care after losing 5-year-old to cancer
02/20/24 at 01:00 AM'A blessing': Sarasota family shares importance of hospice care after losing 5-year-old to cancerCBS News 10 Tampa Bay, by Jenny Dean; 2/16/24While the average time in hospice is 70-80 days, some people defy the odds. And that's largely due to the changes in hospice care over the years. A Sarasota family knows how difficult that decision can be. They lost their 5-year-old daughter to cancer and now say hospice care is something they wish they would have gotten sooner.
Kim Mooney-Doyle awarded nearly $500,000 to study communication needs in families of seriously ill children
02/19/24 at 03:00 AMKim Mooney-Doyle awarded nearly $500,000 to study communication needs in families of seriously ill childrenThe Elm of the University of Maryland, by Mary Therese Phelan; 2/15/24Kim Mooney-Doyle, PhD, RN, CPNP-AC, assistant professor at the University of Maryland School of Nursing (UMSON), has been awarded a two-year R21 grant of $460,000 from the National Institute of Nursing Research (NINR) to research how understanding family communication during serious pediatric illness, from the perspective of adolescent siblings and parents, provides opportunities to prevent long-term distress.
How to support adolescents and young adults with cancer at the end of life
02/15/24 at 03:00 AMHow to support adolescents and young adults with cancer at the end of lifeThe Oncology Nursing Society Voice, by Kimberly Rivera DNP, RN-BC, OCN®, NPD-BC; 2/12/24... [Cancer] is the fourth leading cause of death in adolescents and young adults (AYAs), following accidents, suicide, and homicide. ... Appropriately defining the difference between palliative and end-of-life care can improve AYAs’ engagement with services such as advance care planning—a specific step that increases AYAs’ likelihood of receiving early palliative care. However, many palliative and hospice care services are geared toward pediatric or adult populations and may not meet AYAs’ unique needs, impeding effective care planning.
Sally Norden's skydive for Children's Hospice South West: A leap of faith for a good cause
02/14/24 at 03:00 AMSally Norden's skydive for Children's Hospice South West: A leap of faith for a good causeBNN, by Mazhar Abbas; 2/13/24Sally Norden took a leap of faith and skydived from 15,000 feet to raise funds for Children's Hospice South West. Her courage and dedication to the charity inspired others to support the cause.
See how 5 families balance care and comfort in pediatric palliative care
02/02/24 at 03:00 AMSee how 5 families balance care and comfort in pediatric palliative careNational Geographic, by Taylor Sisk, photographs by Lynn Johnson; 2/1/24This medical team chooses to help families of children in palliative care prioritize quality of Life over taxing procedures and treatments. Our photo essay offers a glimpse of how they make the most out of life. ... [Interviews and photos are with the] Division of Palliative Medicine and Supportive Care at UPMC Children’s Hospital of Pittsburgh. ... The goal of this pediatric hospice program is clear: Put family first.Editor's Note: Note this source, National Geographic. Where do these photos and stories "take" you? I am grateful for Hospice of Louisville's (now, Hosparus) first hospice pediatric program in the U.S. I served on our Pediatric Care team for 4 years, and was forever, profoundly changed by knowing these children and their families.
Increasing access to care: Designing a blended curriculum to educate adult hospice nurses in caring for pediatric patients
01/31/24 at 04:00 AMIncreasing access to care: Designing a blended curriculum to educate adult hospice nurses in caring for pediatric patientsNursing Forum, by Paige L. McDonald, Samia M. Abdallah, Laurie B. Lyons, and Deborah Fisher; 1/29/24Access to care for pediatric hospice patients is inhibited by a lack of providers specifically educated to care for pediatric patients. Education that seeks to address this gap in care must develop the specific knowledge and skills required to care for pediatric patients, and this education must also be delivered in a format that enables convenient access to providers.
Northwestern researchers find significant racial disparities in pediatric health care
01/24/24 at 04:00 AMNorthwestern researchers find significant racial disparities in pediatric health careThe Daily Northwestern, by Isaiah Steinberg; 1/21/24Despite controlling for health insurance status, researchers found vast disparities in health care quality in several pediatric specialties such as neonatal care, emergency medicine and palliative care. ... Researchers saw greatest disparity in care occurred in pain management, with non-white children less likely to be prescribed painkillers for serious medical conditions.
Northwestern researchers find significant racial disparities in pediatric health care
01/24/24 at 04:00 AMNorthwestern researchers find significant racial disparities in pediatric health careThe Daily Northwestern, by Isaiah Steinberg; 1/21/24Despite controlling for health insurance status, researchers found vast disparities in health care quality in several pediatric specialties such as neonatal care, emergency medicine and palliative care. ... Researchers saw greatest disparity in care occurred in pain management, with non-white children less likely to be prescribed painkillers for serious medical conditions.
Healthcare orgs taking steps to remove racial bias from algorithm and AI tools, new report shows
01/23/24 at 04:00 AMHealthcare orgs taking steps to remove racial bias from algorithm and AI tools, new report showsMcKnight's Senior Living, by Aaron Dorman; 1/22/24... A team of doctors at the American Academy of Pediatrics is going through hundreds of algorithms and other materials to find, and remove, anything that could exacerbate racial disparities, a “herculean task,” as the JAMA report describes it. The potential for AI-enabled bias could be a major problem for diagnosing life-threatening conditions in seniors.
The psychological experience of grandparents: proposal of a qualitative clinical assessment tool in pediatric palliative care
01/23/24 at 03:00 AMThe psychological experience of grandparents: proposal of a qualitative clinical assessment tool in pediatric palliative careClin Pract, by Alexandra Jóni Nogueira and Maria Teresa Ribeiro; 1/4/24Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context.
Pediatric care for non-white children is worse across US: Researchers urge policy reform to address disparities
01/19/24 at 04:00 AM
Penn Medicine Provides Parents Tools to grieve and heal after loss
01/19/24 at 04:00 AMPenn Medicine provides parents tools to grieve and heal after lossPenn Medicine News, by Kim Maialetti; 1/11/24Perinatal loss is not uncommon in the United States. According to the Maternal Mental Health Leadership Alliance, 30 percent of all pregnancies end in miscarriage and 21,000 babies are stillborn each year. Additionally, more than three of every 1,000 babies born die before 28 days of life and more than five of every 1,000 die before their first birthday.
Interventions performed in children with immunocompromised conditions in the pediatric intensive care unit within 48 hours of death
01/19/24 at 04:00 AMInterventions performed in children with immunocompromised conditions in the pediatric intensive care unit within 48 hours of deathJ Palliat Med, by Anna Kegel, Jason Espinoza, April Rahrig, Tina Schade-Wills, Courtney M Rowan; 1/17/24Conclusions: Children in the PICU with underlying immunocompromised conditions frequently receive interventions within the 48-hour period preceding death. Palliative care involvement was associated with fewer radiographic studies and fewer occurrences of CPR. The impact of interventions on the dying experience warrants further investigation.