Funding for children's hospices and palliative care charities in England is in crisis with seriously ill children facing a postcode lottery for their care, a new report has revealed.
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| http://dx.doi.org/10.7748/ncyp.28.10.6.s2 | DOI Listing |
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Effects of Elexacaftor-Tezacaftor-Ivacaftor on Nasal and Sinus Symptoms in Children With Cystic Fibrosis.
Pediatr Pulmonol
January 2025
Hôpital Femme Mère Enfant, Hospices Civils de Lyon, 59 Boulevard Pinel, Lyon, France.
Background: New CFTR Modulator triple therapy Elexacaftor-Ivacaftor-Tezacaftor (ETI) prove efficacy in pulmonary outcomes. However, its impact on nasal sinus symptoms in children has not been specifically studied. The aim of this study is to evaluate the impact of this therapy on nasal sinus symptomatology in children aged 6-12 years.
View Article and Find Full Text PDFIncreasing Serious Illness Conversations in Patients at High Risk of One-Year Mortality Using Improvement Science: A Quality Improvement Study.
Healthcare (Basel)
January 2025
Department of Medicine, Division of Geriatrics and Palliative Medicine, Glennan Center for Geriatrics and Gerontology, Eastern Virginia Medical School at Old Dominion University, Norfolk, VA 23508, USA.
Serious illness conversation (SIC) in an important skillset for clinicians. A review of mortality meetings from an urban academic hospital highlighted the need for early engagement in SICs and advance care planning (ACP) to align medical treatments with patient-centered outcomes. The aim of this study was to increase SICs and their documentation in patients with low one-year survival probability identified by updated Charlson Comorbidity Index (CCI) scores.
View Article and Find Full Text PDFDevelopment of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses.
J Patient Rep Outcomes
January 2025
Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore, Singapore.
Background: Rising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood illnesses, we developed a short version of previously validated 45-item PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure.
Methodology: PRECIOUS was administered by parents of children living with serious illnesses at two time-points (baseline and two weeks) in an online survey.
The influence of positive and negative intraoperative feedback in laparoscopic simulation in pediatric urology training.
J Pediatr Urol
January 2025
Department of Pediatric Surgery and Urology, National Reference Center for Rare Urinary Tract Malformations (CRMR MARVU), ERN eUROGEN Accredited Center, Robert-Debré University Hospital, APHP, GHU North, Health Simulation Department, iLumens, Université Paris Cité, Paris, France; UMR INSERM 1141 NEURODEV, Paris, France. Electronic address:
Background And Objective: This study aimed to explore the impact of positive or negative feedback on the performance of trainees in pediatric urology during simulation exercises in pediatric laparoscopy.
Methods: Twenty-five students enrolled in a national Pediatric Urology Laparoscopy Simulation participated in the study. They performed the Fundamentals of Laparoscopic Surgery (FLS) skills, specifically peg-transfer and intracorporeal knot-tying, in a randomized study design while receiving positive or negative feedback from an attending pediatric urologist.
Survey of legislative frameworks and national recommendations governing paediatric maintenance haemodialysis in Europe.
Pediatr Nephrol
January 2025
Centre de Référence des Maladies Rénales Rares, Hôpital Femme Mère Enfant, Hospices Civils de Lyon, 59 boulevard Pinel, 69677, Bron Cedex, France.
Background: The application of international recommendations for paediatric maintenance haemodialysis (HD) could be strengthened by national laws or written recommendations. Our aim was therefore to describe the national rules governing paediatric maintenance HD in European countries.
Methods: A national representative, approved by the president of each paediatric nephrology society, was contacted in all 42 European countries to complete two online questionnaires.
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