MeSH: Prognosis
Shared spiritual beliefs between adolescents with cancer and their families
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BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients’ preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. PROCEDURE: As part of four-site randomized controlled trial of FACE for…
Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults with Cancer
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Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective(s): To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. Design, Setting, and Participant(s): This qualitative study…
Longitudinal understanding of prognosis among adolescents with cancer
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OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents’ understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four…
Parent values and preferences underpinning treatment decision making in poor prognosis childhood cancer: A scoping review protocol
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Introduction Parents of a child with cancer want to be involved in making treatment decisions for their child. Underpinning and informing these decisions are parents’ individual values and preferences. Parents of a child who has a poor prognosis cancer and who subsequently dies can experience decisional regret. To support parents, and potentially reduce decisional regret,…
A Communication Guide for Pediatric Extracorporeal Membrane Oxygenation
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Decision-making surrounding extracorporeal membrane oxygenation initiation and decannulation has become a key challenge in critical care. Nuanced communication skills and transparent discussions about prognosis are imperative during this lifesaving, yet high-risk and burdensome intervention. Serious illness conversation guides are proving beneficial for patients, families and staff to communicate uncertainty and facilitate shared decision-making toward goal-concordant…
COVID-19 Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in children and adolescents: a systematic review of critically unwell children and the association with underlying comorbidities
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Data show that children are less severely affected with SARS-Covid-19 than adults; however, there have been a small proportion of children who have been critically unwell. In this systematic review, we aimed to identify and describe which underlying comorbidities may be associated with severe SARS-CoV-2 disease and death. The study protocol was in keeping with…