Browse Items · Pediatric Palliative Care Library

Absolute leukocyte telomere length in HIV-infected and uninfected individuals: evidence of accelerated cell senescence in HIV-associated chronic obstructive pulmonary disease

Combination antiretroviral therapy (cART) has extended the longevity of human immunodeficiency virus (HIV)-infected individuals. However, this has resulted in greater awareness of age-associated diseases such as chronic obstructive pulmonary disease…

Rotavirus gastroenteritis and seizures in young children

In this retrospective cohort study, a clinical and administrative database of children hospitalized at Primary Children's Medical Center, Salt Lake City, Utah, between January 1, 2002, and December 31, 2006, was used to identify those with…

Patterns of functional decline at the end of life

CONTEXT: Clinicians have observed various patterns of functional decline at the end of life, but few empirical data have tested these patterns in large populations. OBJECTIVE: To determine if functional decline differs among 4 types of illness…

Congenital heart disease in the general population: changing prevalence and age distribution

BACKGROUND: Empirical data on the changing epidemiology of congenital heart disease (CHD) are scant. We determined the prevalence, age distribution, and proportion of adults and children with severe and other forms of CHD in the general population…

Scoring evaluation of the natural course of mucopolysaccharidosis type IIIA (Sanfilippo syndrome type A)

OBJECTIVE: Mucopolysaccharidosis types IIIA through IIID (Sanfilippo syndrome) are caused by deficiencies of enzymes involved in the degradation of heparan sulfate. The onset and severity of the disease are highly variable. The purpose of this study…

Parent bereavement stress and preventive intervention following the violent deaths of adolescent or young adult children

It is currently believed that effective intervention programs can reduce the negative consequences of stressful life events. The purpose of this paper is to describe a three-step process used to develop a theory-based preventive intervention for…

Unexpected Survivors: Children With Life-Limiting Conditions of Uncertain Prognosis

OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of…

Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study

PURPOSE: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been…

The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study

The Design of a Data Management System for a Multicenter Palliative Care Cohort Study

Context. Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. Objective. To describe the design and lessons…

Tags: 2022, Boyden JY, Campos D, Carroll KW, Cohort Studies, Data Management, Feudtner C, Griffis H, Hall M, Hill DL, Journal of Pain and Symptom Management, Katcoff H, May 2022 List, Medical Record Linkage, Multicenter Study, Nye RT, Palliative Care, Wolfe J

Characteristics of family conferences at the bedside versus the conference room in pediatric critical care

OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians…

Empathy Expression in Interpreted and Noninterpreted Care Conferences of Seriously Ill Children

BACKGROUND AND OBJECTIVES: Clinician empathy is associated with improved

Tags: 2023, August List 2042, Bogetz J, Bradford MC, Child, Cohort Studies, Communication, Emotions, Empathy, Female, Fields B, Humans, Male, Mercer A, Olszewski AE, Pediatrics, Prospective Studies, Rosenberg AR, Scott M, Trowbridge A, Williams K

Miglustat for treatment of Niemann-Pick C disease: a randomised controlled study

BACKGROUND: Niemann-Pick type C disease (NPC) is an inherited neurodegenerative disorder characterised by an intracellular lipid-trafficking defect with secondary accumulation of glycosphingolipids. Miglustat, a small iminosugar, reversibly inhibits…

Sleep dysfunction in Rett syndrome: lack of age related decrease in sleep duration

The sleep patterns of a cohort of 83 Rett syndrome females were characterized using a sleep diary for 7 consecutive days and nights and compared with normative sleep data. The mean total sleep time of the cohort was 10.75 h, daytime sleep 0.77 h,…

Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data

Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing…

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…

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,…

The health and well-being of caregivers of children with cerebral palsy.

OBJECTIVE: Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources…

A cross-sectional study on prevalence of pain and breakthrough pain among an unselected group of outpatients in a tertiary cancer clinic

PURPOSE: Systematic knowledge about the prevalence and the treatment effects of cancer pain in patients attending a general oncology outpatient department is limited. The purpose of this study was to investigate the prevalence of pain in a large…

Parental explicit heuristics in decision-making for children with life-threatening illnesses

OBJECTIVE: To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by…

Spiritual aspects of loss among partners of men with AIDS: postbereavement follow-up

This article is a follow-up study of bereaved caregiving male partners of men with AIDS (T.A. Richards & S. Folkman, 1997). The earlier study examined spiritual beliefs, experiences, and practices reported in interviews with 125 caregivers conducted…

Spiritual aspects of loss at the time of a partner's death from AIDS

Spiritual phenomena were spontaneously reported in interviews of 68 of 125 recently bereaved HIV-positive and HIV-negative partners of men who died from AIDS. Spiritual schemas involving beliefs, experiences, rituals, social support, and roles were…

Tags: 1997, Acquired Immunodeficiency Syndrome, Backlog, Caregivers/psychology, Cohort Studies, Death studies, Folkman S, Grief, Homosexuality, Humans, Interviews As Topic, Journal Article, Longitudinal Studies, Male, Male/psychology, Religion and Psychology, Richards TA, San Francisco

Reader's guide to critical appraisal of cohort studies: Role and design.

2005

Tags: 2005, Anderson GM, Backlog, Bmj (clinical Research Ed.), Cohort Studies, Garfinkel S, Gurwitz JH, Journal Article, Longitudinal Studies, Mamdani M, Normand SL, Randomized Controlled Trials, Research Design, Rochon PA, Selection Bias, Streiner DL, Sykora K

Safety of subcutaneous clodronate and efficacy in hypercalcemia of malignancy: a novel route of administration

Bisphosphonates have become standard treatment in management of malignancy-induced hypercalcemia and malignant bone pain. One obstacle to the routine use of bisphosphonates in palliative patients is that oral bisphosphonates have low bioavailability…

Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)

Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease…

Tags: 2019, Adolescent, Adult, Age, Aged, America, Amin R, amyotrophic lateral sclerosis, amyotrophic lateral sclerosis/ep [Epidemiology], Animals, APEC countries, Article, August 2019 List, Bai Y, Canada, Child, childhood disease/ep [Epidemiology], childhood diseases, Children, Chordata, Cohort Analysis, Cohort Studies, Commonwealth of Nations, Controlled Study, Data Base, death rate, Developed Countries, Disease Course, disease prevalence, Disease Progression, Eukaryotes, Female, Gershon A, Goldstein R, Health Care, health Insurance, Hominidae, Homo, Human, Human Diseases, Incidence, Infant, International Classification of Diseases, Katz S, Leasa D, Major Clinical Study, Male, Mammals, Man, McKim D, Middle Aged, Mortality, mortality rates, muscles, neuromuscular disease/ep [Epidemiology], Neuromuscular Diseases, Neuromuscular Disorders, Nonoyama M, North America, OECD Countries, Ontario, Palliative Care, Palliative Therapy, planning, PLoS One, Population Research, Preschool Child, Prevalence, Primates, Retrospective Studies, Retrospective Study, Rose L, School Child, sclerosis, spinal muscular atrophy/ep [Epidemiology], Spine, Survival, Tandon A, trend study, Trends, Vertebrates, Young Adult

Duration and morbidity of newly diagnosed idiopathic thrombocytopenic purpura in children: A prospective Nordic study of an unselected cohort

OBJECTIVE: To determine the duration of the risk period with platelet counts 1 month and 25 had 30 events. Among 93 patients with chronic ITP, 73 were at risk >1 month and 44 had 111 events. Events occurred with an average frequency of 0.39 per month…

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…

Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis

OBJECTIVE: To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients' homes. DESIGN: Pooled analysis of a retrospective cohort study. SETTING: Ontario, Canada. PARTICIPANTS: 3109 patients…

Development and preliminary validation of the 'Mind the Gap' scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis

BACKGROUND: To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. METHODS: The 'Mind the Gap' scale was developed using evidence from a previous needs assessment, in three…

Young people's satisfaction of transitional care in adolescent rheumatology in the UK

BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK…

Characteristics of a pediatric hospice palliative care program over 15 years.

OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This…

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…

Life expectancy of children with cerebral palsy

Risk factors for mortality of young children with cerebral palsy were studied using a sample of 12,709 children aged 0.5-3.5 years with cerebral palsy who had received services from the State of California between 1980 and 1995. The most powerful…

Depressive symptoms in mothers after perinatal and early infant loss in rural Bangladesh: a population-based study

Place of death: preferences among cancer patients and their carers

The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the…

Relationships between symptom relief, quality of life, and satisfaction with hospice care

Hospices were founded to alleviate suffering at the end of life. Quality improvement in hospices should, therefore, target patients' subjective assessments of their care and its outcomes. However, little is known about the relationships among…

Quantitative estimation of rare adverse events which follow a biological progression: a new model applied to chronic NSAID use

Randomised controlled trials (RCTs) alone are unlikely to provide reliable estimates of the incidence of rare events because of their limited size. Cohort, case control, and other observational studies have large numbers but are vulnerable to various…

The use of conscious sedation for pain control during forearm fracture reduction in children: does race matter?

Recent reports in the medical literature indicate that certain racial disparities have been identified in healthcare. The authors sought to identify the potential relationship between the use of pain medications in African-American and Caucasian…

Use of hospitals, physician visits, and hospice care during last six months of life among cohorts loyal to highly respected hospitals in the United States

OBJECTIVE: To evaluate the use of healthcare resources during the last six months of life among patients of US hospitals with strong reputations for high quality care in managing chronic illness. DESIGN: Retrospective cohort study based on claims…

Easing of suffering in children with cancer at the end of life: is care changing?.

PURPOSE: In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought…

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