January 2022 List

Title

January 2022 List

Collection Items

Objectives To evaluate whether Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric patient-reported outcome (PRO) measures can serve as valid endpoints in a clinical trial of a chronic pediatric illness. Study design We…

INTRODUCTION: Transition from paediatric to adult care is a complex process, which poses significant challenges for adolescents with chronic physical and mental illnesses. For many, transfer to adult care is associated with poor health and…

Background: Assessing patient-reported outcomes (PROs) through interviews or conversations during clinical encounters provides insightful information about survivorship. Objective: This study aims to test the validity of natural language processing…

Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family…

Objective: The study aimed to identify and map the factors that shape the delivery of hospital-based lactation care for bereaved mothers to inform quality improvement initiatives targeting hospital-based lactation care. Methods: Focus groups and…

BackgroundThe 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care.ObjectiveThe purpose of this study was…

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular…

Advance care planning enables parents to discuss their goal and wishes for the future treatment and care of their life-limited or life-threatened child. Whilst research has identified the barriers clinicians face to initiate such discussions, the…

Perinatal palliative care has grown out of both an historical necessity in attending to babies in the NICU that face difficult odds of survival, the increasing technology that may avail life-extending, yet technology-dependent, care, and the growth…

INTRODUCTION: Little is known about the requests for and recommendations from inpatient pediatric palliative care (PPC) consults and whether they differ by patient location (ward vs. intensive care unit) or patient type (new vs. established with…

Background: Consultation of specialty palliative care remains uncommon in pediatric stem cell transplant (SCT) despite growing evidence that early integration of palliative care improves outcomes in patients with advanced cancers or undergoing SCT.…

Context: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element of successful pediatric advance care planning (pACP). Yet, they are perceived as a challenging…

Background: While hematological symptoms are considered difficult to manage in a Pediatric Palliative Care setting, home may still represent a safe and convenient place for transfusions in patients with advanced malignancy or chronic conditions. This…

BACKGROUND: Medical cannabis may be a useful tool for managing treatment-resistant epilepsy and chronic pain, which affect many patients in pediatric palliative care (PPC); however, little evidence is available in this setting. CASE PRESENTATION: We…

The adequate assessment and management of pain remains a challenging task in the Pediatric Intensive Care Unit (PICU). Our goal is to describe how pain is assessed and managed in PICUs around the world and to examine how human and material resources…

BACKGROUND: Living with a child who has a life-limiting condition (LLC) is likely to have a major impact on all family members. There is a need to have a clearer understanding of the nature and extent of this impact on parents and well-siblings. The…

PURPOSE: Pediatric hospice is a comprehensive model of care for medically complex children at end of life. The Affordable Care Act changed regulatory requirements for pediatric Medicaid enrollees to allow for enrollment into hospice services while…

BACKGROUND: Children with non-malignant life-limiting conditions (NMLLCs) constitute the largest proportion of children requiring palliative care. In part, due to technological advances, growing numbers of such children are experiencing improved…

A symposium held at the 42nd annual Society for Medical Decision Making conference on October 26, 2020, focused on intergenerational decision making. The symposium covered existing research and clinical experiences using formal presentations and…

Constipation is a distressing and uncomfortable symptom children experience at end of life. There is a gap in knowledge about how different approaches to hospice care delivery might improve pediatric symptom management of constipation. The purpose of…

Pediatric palliative care (PPC) is a set of actions aimed at children who suffer from a severe or life-threatening disease to alleviate the symptoms of the disease and improve the quality of life of both the child and his/her family. One of the tools…

Children with complex chronic conditions have a high need for health and social care resources. Many parents explore parallel resources such as alternative therapies, associations, psychological support, private medical consultations, and other…

AIM: The aim of this paper is to conduct a concept analysis on the term, "children with medical complexity." BACKGROUND: Children with medical complexity (CMC) describes pediatric patients with chronic, sustained acuity; however, there is a lack of…

Hospices for children and adolescents in the United Kingdom provide care to the bodies of deceased children in specially designed chilled bedrooms called "cool rooms." In an effort to develop resources to support hospice practitioners to provide this…

Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a…

Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both…

To complete the curriculum, learners rotating through a pediatric palliative care service are asked to submit a piece of reflective writing. Here, we share an edited version of the narrative one student submitted, accompanied by a brief consideration…
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