Browse Items · Pediatric Palliative Care Library

Children's experiences of cystic fibrosis: a systematic review of qualitative studies

BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children…

Decision aids for advance care planning: an overview of the state of the science.

Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have…

Tags: 2014, Advance Care Planning, Annals Of Internal Medicine, Backlog, Butler M, Decision Support Techniques, Humans, Internet, Journal Article, Kane RL, McCreedy E, Prognosis, Ratner E, Shippee N, Terminally Ill

Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?

BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We…

Prognostic categories and timing of negative prognostic communication from critical care physicians to family members at end-of-life in an intensive care unit

Negative prognostic communication is often delayed in intensive care units, which limits time for families to prepare for end-of-life. This descriptive study, informed by ethnographic methods, was focused on exploring critical care physician…

Tags: 2013, Adolescent, Adult, Aged, Backlog, Communication, Critical Care, Family, Female, Gutierrez KM, Humans, Intensive Care Units, Journal Article, Male, Middle Aged, Nursing Inquiry, Professional-family Relations, Prognosis, Terminal Care

The effects of the Palliative Medicine Consultation on the DNR status of African Americans in a safety-net hospital.

OBJECTIVE: To examine the effectiveness of palliative medicine consultation on completion of advance directives/do-not-resuscitate (DNR) orders by racial/ethnic minorities., METHOD: A sample of 1999 seriously ill African American and Hispanic…

Exploring communication difficulties in pediatric hematology: oncology nurses

BACKGROUND: Communication plays an important role for the well being of patients, families and also health care professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety, hopelessness and decreased of…

Communicating with seriously ill patients: better words to say

2009

Tags: 2009, Advance Care Planning, Backlog, Humans, JAMA, Journal Article, Language, Pantilat SZ, Physician-patient Relations, Prognosis, Terminal Care

Lung disease in Niemann-Pick disease

BACKGROUND: Lung involvement in children with Niemann-Pick disease has rarely been studied systematically. OBJECTIVE: To assess the involvement of the lung and the value of bronchoalveolar lavage in children with Niemann-Pick diseases. DESIGN:…

Changing mortality in congenital heart disease

OBJECTIVES: This study sought to characterize temporal trends in all-cause mortality in patients with congenital heart disease (CHD). BACKGROUND: Historically, most deaths in patients with CHD occurred in early childhood. Notable advances have since…

Validation of the palliative performance scale in the acute tertiary care hospital setting

BACKGROUND: Physicians are often asked to prognosticate patient survival. However, prediction of survival is difficult, particularly with critically ill and dying patients within the hospitals. The Palliative Performance Scale (PPS) was designed to…

Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study

BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To…

Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit

OBJECTIVE: Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians…

Hope and prognostic disclosure

PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer…

Prognostic factors for survival in 676 consecutive patients with newly diagnosed primary glioblastoma

Reliable data on large cohorts of patients with glioblastoma are needed because such studies differ importantly from trials that have a strong bias toward the recruitment of younger patients with a higher performance status. We analyzed the outcome…

The reflections you get': an exploration of body image and cachexia.

BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people…

Pediatric cardiopulmonary resuscitation: advances in science, techniques, and outcomes

More than 25% of children survive to hospital discharge after in-hospital cardiac arrests, and 5% to 10% survive after out-of-hospital cardiac arrests. This review of pediatric cardiopulmonary resuscitation addresses the epidemiology of pediatric…

Gastroesophageal reflux

Advanced care planning in children with life-limiting conditions – the Wishes Document

Neonatal management of trisomy 18: Clinical details of 24 patients receiving intensive treatment.

Management of neonates with trisomy 18 is controversial, supposedly due to the prognosis and the lack of precise clinical information concerning efficacy of treatment. To delineate the natural history of trisomy 18 managed under intensive treatment,…

Anorexia/cachexia-related quality of life for children with cancer

BACKGROUND: Anorexia is a common symptom in patients with cancer, which can lead to poor tolerance of treatment and can contribute to cachexia in extreme cases. Children with advanced-stage cancer are especially vulnerable to malnutrition resulting…

Menkes' kinky hair syndrome

Trisomy 18 in neonates: prenatal diagnosis, clinical features, therapeutic dilemmas and outcome

The study aimed to analyse the clinical courses of aggressively treated neonates with cytogenetically confirmed trisomy 18, with special attention focused on the efficiency of prenatal diagnostics, associated malformations, therapeutic dilemmas and…

Biochemical, clinical and molecular findings in LCHAD and general mitochondrial trifunctional protein deficiency

General mitochondrial trifunctional protein (TFP) deficiency leads to a wide clinical spectrum of disease ranging from severe neonatal/infantile cardiomyopathy and early death to mild chronic progressive sensorimotor poly-neuropathy with episodic…

Enabling the transition to hospice through effective palliative care

The end of life has changed dramatically in recent years as life expectancies have increased, chronic disease rates have risen, and families, health care systems, and society have changed. As technology has advanced, death too often has become viewed…

The natural history of medium-chain acyl CoA dehydrogenase deficiency in the Netherlands: clinical presentation and outcome

OBJECTIVES: To describe the clinical presentation and long-term follow-up of a large cohort of patients with medium-chain acyl-CoA dehydrogenase (MCAD) deficiency. STUDY DESIGN: A nationwide, retrospective analysis of clinical presentation and…

A scale to monitor progression and treatment of mitochondrial disease in children.

Mitochondrial diseases affect all age groups, but those with childhood onset often seem to experience the greatest burden of disability. In some paediatric patients this can be explained by a cumulative disability acquired over many years. In others,…

The Groningen protocol--euthanasia in severely ill newborns

2005

Tags: 2005, Backlog, Death and Euthanasia, Euthanasia/ethics/legislation & jurisprudence, Humans, Infant, Intensive Care/ethics/legislation & jurisprudence, Journal Article, Netherlands, Newborn, Practice Guidelines, Prognosis, Sauer PJ, The New England Journal Of Medicine, Third-Party Consent/legislation & jurisprudence, Verhagen E

Prognostication in hospice care: can the palliative performance scale help?

BACKGROUND: Accurate prognostication of the trajectory of an illness provides multiple benefits in end-of-life care. Prognostic information facilitates more realistic decision making regarding ongoing treatment, fosters risk-benefit considerations of…

Clinical manifestation and natural course of late-onset Pompe's disease in 54 Dutch patients

Late-onset Pompe's disease (acid maltase deficiency, glycogen storage disease type II) is a slowly progressive myopathy caused by deficiency of acid alpha-glucosidase. Current developments in enzyme replacement therapy require detailed knowledge of…

Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis.

PURPOSE OF REVIEW: Pediatric palliative care, with its emphasis on symptom management and quality of life, is an important aspect of care of children with life-threatening illnesses. We review recent publications with implications for care of these…

Tags: 2006, Backlog, Bereavement, Child, Communication, Current Opinion In Pediatrics, Decision Making, Humans, Journal Article, Longitudinal Studies, Mack JW, Palliative Care, Prognosis, Quality Of Life, Terminal Care, Time Factors, Wolfe J

Childhood idiopathic thrombocytopenic purpura in the Nordic countries: epidemiology and predictors of chronic disease

AIM: To describe the epidemiology of idiopathic thrombocytopenic purpura (ITP) in the Nordic countries, to define clinical subgroups and to investigate factors predicting chronic disease. METHODS: A prospective registration was done from 1998 to…

Death in the neonatal intensive care unit: changing patterns of end of life care over two decades

BACKGROUND: Death remains a common event in the neonatal intensive care unit, and often involves limitation or withdrawal of life sustaining treatment. OBJECTIVE: To document changes in the causes of death and its management over the last two…

Retrospective, multicentric study of 180 children with cytochrome C oxidase deficiency

A retrospective, multicenter study of 180 children with cytochrome c oxidase (COX) deficiency analyzed the clinical features, prognosis, and molecular bases of the COX deficiency. Clinical symptoms including failure to thrive, encephalopathy,…

Long-term follow-up of neonatal mitochondrial cytopathies: a study of 57 patients

OBJECTIVES: We sought to determine the long-term clinical and biochemical outcome of newborns with mitochondrial cytopathies (MCs) and to identify possible prognostic factors that may modify the course of these diseases. MATERIAL AND METHODS:…

Inter-religious perspectives on hope and limits in cancer treatment: one Buddhist chaplain's response to the case

2005

Tags: 2005, Backlog, Buddhism, Corbett-Hemeyer J, Decision Making, Family Health, Humans, Journal Article, Journal Of Clinical Oncology, Mother-child Relations, Neoplasms/drug therapy/pathology/psychology, Palliative Care, PedPal Lit, Prognosis, Religion

Pediatric palliative care: relationships matter and so does pain control

Factors related to the quality of life in adolescents with chronic pain

OBJECTIVE: This study examined the relationships between pain characteristics, psychosocial factors, and quality of life among adolescents with chronic pain that existed for at least 3 months, either recurrently (ie, pain with pain-free intervals) or…

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