Although the concept of anticipatory guidance has long been used in general pediatrics to help prepare parents for what to expect in the coming months or year, this educational concept has not been transplanted for use in other contexts. The intervention described in this article uses the principles of anticipatory guidance in an effort to prepare parents of children with newly diagnosed acute leukemia for their upcoming discussions with their child's physician. Parents of children recently diagnosed with leukemia frequently feel overwhelmed and are anxious to discover what can be done to cure their child. By using the abilities of already medically trained oncology nurses and orienting them to conduct an intervention to educate, (empathize) emphasize, and prepare parents for the informed consent conference, this anticipatory guidance-based intervention was designed to target barriers to effective communication and increase the interactivity between families and health care providers.
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http://dx.doi.org/10.1177/1043454207311916 | DOI Listing |
Skinmed
January 2025
Department of Dermatology, University of Cincinnati, Cincinnati, OH.
As the presurgical size and anatomic location of non-melanoma skin cancer correlates to the complexity of Mohs micrographic surgery (MMS), patients are frequently asked to self-report their preoperative tumor size to aid in efficient scheduling and triage. We aimed to assess the accuracy of patient's self-reported lesion measurements prior to MMS by comparing patient's estimates of lesion size to the measurements taken by a Mohs surgeon. We conducted a retrospective chart review of 1,000 patients who underwent MMS and self-reported their lesion size at a preoperative telehealth visit.
View Article and Find Full Text PDFPediatr Rev
January 2025
Department of Pediatrics, Division of Pediatric Critical Care Medicine, University of Florida College of Medicine-Jacksonville, Florida.
Pediatricians follow patients longitudinally and hold a unique position to address multiple issues, medical and psychosocial, that affect organ donation and transplantation. They are wellpositioned to provide anticipatory guidance during well-child visits and during care for children with end-stage organ failure and can either assist these patients with ongoing medical management or refer these patients for organ transplantation assessment. A pediatrician's trusted relationship with families and patients allows for guidance on medical and ethical issues surrounding brain death, organ donation, and transplantation.
View Article and Find Full Text PDFGenet Med
December 2024
Movement Disorders Program, Department of Neurology and F.M. Kirby Neurobiology Center, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, USA. Electronic address:
Objectives: Biallelic HPDL variants have been identified as the cause of a progressive childhood-onset movement disorder, with a broad clinical spectrum from severe neurodevelopmental disorder to juvenile-onset pure hereditary spastic paraplegia type 83. This study aims at delineating the geno- and phenotypic spectra of patients with HPDL-related disease, quantitatively modelling the natural history, and uncovering genotype-phenotype associations.
Methods: A cross-sectional analysis of 90 published and one novel case was performed, employing a Human Phenotype Ontology-based approach.
Pediatrics
January 2025
Robert's Program on Sudden Unexpected Death in Pediatrics, Division of General Pediatrics, Boston Children's Hospital, Boston, Massachusetts.
Background And Objectives: A death scene investigation is required to determine sudden infant death syndrome, and a doll reenactment optimizes the information obtained. The aim of this study was to explore how acutely bereaved parents experience doll reenactments that are conducted after the sudden and unexpected deaths of their infants.
Methods: A mixed-methods design, including surveys and semi-structured interviews, was used in a cross-sectional, national study to explore the experiences of doll reenactment among 45 bereaved parents.
Health Care Transit
December 2023
School of Nursing, McMaster University, Hamilton, ON, Canada.
Background: A growing population of youth with medical complexity (YMC) are entering adult health care, education, and social systems in which their needs have been largely neglected. To better support YMC and their families, an understanding of how they manage the challenges of transitioning to adult services is needed. The aim of this study was to examine how families of YMC adapt to challenges and opportunities posed by the youth's transition to adulthood and transfer to adult services.
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