Browse Items · Pediatric Palliative Care Library

Delivery Room Practices For Extremely Preterm Infants: The Harms Of The Gestational Age Label.

Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists

We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…

Tags: 2016, Adult, American Journal of Medical Genetics Part A, Article, Attitude Of Health Personnel, Attitude To Abortion, Biggio JR, Caucasian, Christian, Chromosomes Human Pair 18, Clinical Practice, Correlation Analysis, December 2017 List, Demography, Disease Management, Disease Severity, Edwards RK, Family, Female, Fetus Malformation, Health Care Surveys, Human, Humans, Intellectual Impairment, Jacobs AP, Male, Marriage, Medical Decision Making, Medical Society, Neonatologist, Neonatologists/px [psychology], Newborn Care, Normal Human, Outcome Assessment (health Care), Palliative Care, Palliative Therapy, Parental Attitude, Philips JB 3rd, Physician Attitude, Practice Patterns Physicians', Prenatal Diagnosis, Priority Journal, Race Difference, Resuscitation, Robin NH, Subramaniam A, Survival Rate, Tang Y, Trisomy 18, Trisomy/di [diagnosis], United States

Complementary and alternative therapy use in pediatric oncology patients with failure of frontline chemotherapy

BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed.…

Survival estimates of severely disabled children

Prognosis for survival and improvement in function in children with severe developmental disabilities

OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The…

Effect of severity of disability on survival in north east England cerebral palsy cohort

AIMS: To investigate the effect of motor and cognitive disabilities on the survival of people on the North of England Collaborative Cerebral Palsy Survey, and compare this with other published results. METHODS: The cerebral palsy cohort consists of…

Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study

OBJECTIVE: To describe doctors' prognostic accuracy in terminally ill patients and to evaluate the determinants of that accuracy. DESIGN: Prospective cohort study. SETTING: Five outpatient hospice programmes in Chicago. PARTICIPANTS: 343 doctors…

Tags: 2000, Backlog, Bmj, Christakis NA, Clinical Competence/standards, Cohort Studies, Human, Journal Article, Lamont EB, Male, Medical Errors/statistics & numerical data, Non-U.S. Gov't, Prognosis, Prospective Studies, Support, Survival Rate, Terminal Care/standards, Terminally Ill

Reduced life expectancy in 40 cases of early onset cerebellar ataxia with retained tendon reflexes: a population-based study

A survival analysis of 40 cases of early onset cerebellar ataxia (EOCA) with retained tendon reflexes was performed. They represent all cases of EOCA diagnosed between 1945 and 1990 among residents of a defined area of Northwestern Italy, followed up…

Survival rates among children with severe neurologic disabilities

BACKGROUND: This study was done to determine survival rates in subpopulations of severely neurologically disabled children who reside in pediatric skilled nursing facilities and to compare these survival rates with those in previously published…

Has the increased survival of premature infants affected resource utilization in pediatric intensive care units?

2000

Tags: 2000, Anand KJ, Backlog, Critical Care Medicine, Diseases/mortality/therapy, Health Policy, Humans, ICU Decision Making, Infant, Intensive Care Units/utilization, Journal Article, Newborn, Patient Readmission/statistics & numerical data, Premature, Survival Rate, Tilford JM

Task force 1: the changing profile of congenital heart disease in adult life

Quality assurance by specification and achievement of goals in palliative cancer treatment

As the goals of palliative cancer treatments have not always been clearly specified, this paper describes how frequently the goals of palliative cancer treatment can be specified according to a given definition and how frequently those specified…

Limitations and withdrawals of medical intervention in pediatric critical care

OBJECTIVE--To investigate the use and implementation in pediatric intensive care units (PICUs) of three levels of restriction of medical intervention: do not resuscitate (DNR), additional limitations of medical interventions beyond DNR, and…

A prospective investigation into the epidemiology of in-hospital pediatric cardiopulmonary resuscitation using the international Utstein reporting style

OBJECTIVE: Data regarding pediatric in-hospital cardiopulmonary resuscitation (CPR) have been limited because of retrospective study designs, small sample sizes, and inconsistent definitions of cardiac arrest and CPR. The purpose of this study was to…

Non-compliance in children post-liver transplant. Who are the culprits?

Although non-compliance in pediatric liver transplants is known to be a major cause of late graft loss and patient mortality, follow-up seems inconsistent. As liver transplant becomes a luxury because of the shortage of organs, the need to maximize…

The biochemical basis of metabolism in cancer cachexia

Cancer cachexia is a syndrome of progressive body wasting characterized by loss of adipose tissue and skeletal muscle mass. It is the most common side effect of malignancy occurring in approximately one-half of untreated cancer patients. The…

Intensive care unit admission has minimal impact on long-term mortality

OBJECTIVE: To measure the association between intensive care unit (ICU) admission and both hospital and long-term mortality, separate from the effect of hospital admission alone. DESIGN: Retrospective cohort study. SETTING: All hospitals in British…

Demographic transition of the Swedish cystic fibrosis community--results of modern care

Assessing the results of modern cystic fibrosis (CF)-care and estimating the future population and its demography is important to evaluate the treatment regimens and to calculate the future needs of health-care resources. This paper updates previous…

Survival rates of children with severe neurologic disabilities: a review

Knowledge of accurate survival rates of children with neurologic disabilities is important for third-party insurance payers planning future medical expenses. This is of particular importance to pediatric skilled nursing facilities (SNFs) that depend…

Tags: 2003, Backlog, Bias (Epidemiology), Child, Disabled Children, Health Services Accessibility, Humans, Journal Article, Nervous System Diseases/mortality, Nutritional Failure, Plioplys AV, Seminars In Pediatric Neurology, Skilled Nursing Facilities, Survival Rate, United States/epidemiology

Medicare cost in matched hospice and non-hospice cohorts

Hospice care is perceived as enhancing life quality for patients with advanced, incurable illness, but cost comparisons to non-hospice patients are difficult to make. The very large Medicare expenditures for care given during the end of life,…

Long-term follow-up, neurological outcome and survival rate in 28 Nordic patients with glutaric aciduria type 1

All 28 patients, 13 females and 15 males, with glutaric aciduria type 1 diagnosed between 1975 and 2001 in Denmark, Finland, Norway and Sweden were identified and studied retrospectively until 2001. Mass screening was not performed. Three were…

Peroxisome biogenesis disorders with prolonged survival: phenotypic expression in a cohort of 31 patients

The peroxisome biogenesis disorders (PBDs) with generalized peroxisomal dysfunction include Zellweger syndrome (ZS), neonatal adrenoleukodystrophy (NALD), and infantile Refsum disease (IRD). There is clinical, biochemical, and genetic overlap among…

Mapping the journey of cancer patients through the health care system. Part 3: An approach to staging

This is the third in a series of articles relating results from a line of research whose intent was to construct a complete history of patient interactions with the health care system using available data sources for all patients diagnosed in 1990…

Enteral and parenteral nutrition in terminally ill cancer patients: a review of the literature

Many terminally ill patients who are able to eat appear to be eating less than they should, losing weight, and becoming malnourished, and many others develop difficulties with eating. These symptoms and signs are usually a marker of advanced cancer,…

Morbidity and mortality after percutaneous endoscopic gastrostomy in children with neurological disability

BACKGROUND AND AIM: Gastrostomy placement has become an integral mechanism for delivering nutritional support to children with severe neurological disability. Its impact on gastroesophageal reflux and mortality remains contentious. We examined the…

A retrospective, multinational, multicenter study on the natural history of infantile-onset Pompe disease

OBJECTIVE: To characterize the natural progression of infantile-onset Pompe disease. STUDY DESIGN: Retrospective chart reviews of 168 patients with documented acid alpha-glucosidase deficiency and symptom onset by 12 months of age; Kaplan-Meier…

Safety and efficacy of rosuvastatin therapy for the prevention of hyperlipidemia in adult cardiac transplant recipients

BACKGROUND: Hyperlipidemia after orthotopic heart transplantation (OHT) is associated with immunosuppression. Many OHT patients have increased lipid levels above published guidelines despite treatment with high doses of statins. Treatment with…

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,…

Clinical characteristics and survival of trisomy 18 in a medical center in Taipei, 1988-2004.

Trisomy 18 is the second most common autosomal trisomy in newborns. The birth prevalence of this disorder is approximately 1 in 3,000 to 1 in 8,000, and the life span of the majority of patients is less than 1 year. As information regarding outcome…

Outcomes in children after intestinal transplant

OBJECTIVE: The survival rates after pediatric intestinal transplant according to underlying disease are unknown. The objective of our study was to describe the population of pediatric patients receiving an intestinal transplant and to evaluate…

Canadian cancer statistics at a glance: cancer in children

Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: insights from a multicentre study

BACKGROUND: Understanding patients' needs and perspectives is fundamental to improving end-of-life (EOL) care. However, little is known of what quality care means to patients who have advanced lung disease. OBJECTIVES: To describe ratings of…

Impact of an inpatient palliative care team: a randomized control trial.

BACKGROUND: Palliative care improves care and reduces costs for hospitalized patients with life-limiting illnesses. There have been no multicenter randomized trials examining impact on patient satisfaction, clinical outcomes, and subsequent health…

Tags: 2008, Advance Directives/sn [Statistics & Numerical Data], Advance Directives/statistics & Numerical Data, Aged, Backlog, Beane J, Blum M, Conner D, Cooperative Behavior, Critical Illness/ep [Epidemiology], Critical Illness/epidemiology, Critical Illness/psychology, Critical Illness/px [psychology], Critical Illness/rehabilitation, Critical Illness/rh [Rehabilitation], Della PR, DNAR, DNAR Outcomes, Gade G, Hospice Care/ut [Utilization], Hospice Care/utilization, Hospitalization, Hospitalization/statistics & numerical data, Humans, Journal Article, Journal of Palliative Medicine, Liberson M, McGrady K, Palliative Care/methods, Palliative Care/mt [methods], Patient Care Team, Patient Satisfaction, Prospective Studies, Quality Of Life/psychology, Quality Of Life/px [psychology], Richardson RH, Survival Rate, Venohr I, Williams MP

Trends in the use of opioids at the end of life and the expected effects on hastening death

The aim of our study was to describe trends in opioid use and perceptions of having hastened the end of life of a patient. In 2005, a questionnaire was sent to 6860 physicians in The Netherlands who had attended a death. The response rate was 78%. In…

An international/multicentre report on patients with cystic fibrosis (CF) over the age of 40 years

BACKGROUND: The lifespan of patients with cystic fibrosis (CF) is increasing significantly. The objective of this international pilot study was to study the characteristics of these long-term survivors. METHODS: Four centres with large CF clinics…

Outcomes of unrelated umbilical cord blood transplantation for X-linked adrenoleukodystrophy

Adrenoleukodystrophy (ALD) is an X-linked disorder caused by a defect in the metabolism of long chain fatty acids leading to demyelination, neurodegeneration, and death. The disease typically presents in young boys and adolescent boys. Allogeneic…

Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States

Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed…

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