Browse Items · Pediatric Palliative Care Library

The course of the terminal phase in patients with amyotrophic lateral sclerosis

The fear of "choking to death" is on the mind of most patients suffering from amyotrophic lateral sclerosis (ALS). So far, however, there have been no systematic surveys concerning the dying phase in a general ALS population. We therefore performed a…

Comfort care for terminally ill patients. The appropriate use of nutrition and hydration

OBJECTIVE--To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation.…

Assessing the clinical importance of symptomatic improvements. An illustration in rheumatology

OBJECTIVE: To estimate when a difference in disability symptoms is sufficiently large to be important to individual patients. DESIGN: Cross-sectional analysis of two groups: derivation set (n = 46) and validation set (n = 57). SETTING: The Arthritis…

An alternative in terminal care: results of the National Hospice Study

Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional…

An overview of National Hospice Study findings

A measure of the quality of dying and death. Initial validation using after-death interviews with family members

A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of…

Research methodology: cancer cachexia syndrome

Cachexia is a syndrome and therefore does not have a specific definition. Patients are characterized by the presence of anorexia, early satiety, weight loss, weakness, anaemia and oedema. These features occur to a variable extent in different…

Tags: 2004, Ambulatory Care, Backlog, Biomedical Research/methods, Body Composition, Cachexia/etiology, Dahele M, Exercise/physiology, Fearon KC, Humans, Journal Article, Neoplasms/complications, Nutritional Status, Palliative Medicine, Placebo Effect, Prognosis, Quality Of Life, Weight Gain

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

Liver transplantation for Wilson's disease: long-term results and quality-of-life assessment

BACKGROUND: Wilson's disease associated with severe liver disease is effectively cured by orthotopic liver transplantation (OLT). However, there are also anecdotal reports of improved or resolved neurologic symptoms after OLT in patients with stable…

Intravenous ketamine infusion as an adjuvant to morphine in a 2-year-old with severe cancer pain from metastatic neuroblastoma

A 2.8-year-old female patient (11.6 kg) was admitted to the hospital for uncontrolled pain and swelling in the left leg relating to a metastatic neuroblastoma. Initially, her pain was managed with oral morphine 2 mg (approx. 0.2 mg/kg) every 4 hours.…

Parental perspectives on end-of-life care in the pediatric intensive care unit

OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died…

Palliative care in children with cancer: which child and when?

At a time of increasing interest in palliative care in pediatrics, pediatric oncology programs may be failing to deliver adequate palliation to children with cancer. In a recent study, parents of children who died on a pediatric oncology service…

Quantitative and qualitative analysis of gastroesophageal reflux after percutaneous endoscopic gastrostomy

BACKGROUND/PURPOSE: Percutaneous endoscopic gastrostomy (PEG) is of great benefit to a defined population of children, but gastrostomy has been implicated in causation or exacerbation of gastroesophageal reflux (GER). The aim of this study was to…

Functional ability, social support, and depression in rheumatoid arthritis

OBJECTIVE: First, to investigate the patterns of functional ability, depressive feelings, and social support in early stage rheumatoid arthritis (RA) patients. Second, to demonstrate the stress buffering effect of social support. Social support is…

The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group

2004

Tags: 2004, 80 and over Child Comparative Study Cross-Cultural Comparison Cross-Sectional Studies Female Humans Male Middle Aged Psychometrics/, 830). Sick and well respondents were sampled from the general population, Adolescent Adult Aged Aged, and to test its main psychometric properties. The WHOQOL-BREF is a 26-item version of the WHOQOL-100 assessment. Its psychometric properties were analysed using cross-sectional data obtained from a survey of adults carried out in 23 countries (n = 11, as reflected by its four domains: physical, as well as from hospital, Backlog, clinical settings and clinical trials. Using data from the WHOQOL-BREF field trials, cross-culturally valid assessment of QOL, discriminant validity and construct validity through confirmatory factor analysis, indicate that the WHOQOL-BREF has good to excellent psychometric properties of reliability and performs well in preliminary tests of validity. These results indicate that overall, instrumentation, item-total correlations, Journal Article, Lotfy M, O'Connell KA, PedPal Lit, Psychological, Quality Of Life, Quality of Life Research, rehabilitation and primary care settings, serving patients with physical and mental disorders and with respect to quotas of important socio-demographic variables. The WHOQOL-BREF self-assessment was completed, Sickness Impact Profile World Health Organization%X Quality of life (QOL) assessments that are easily administered and which do not impose a great burden on the respondent are needed for use in large epidemiological surveys, Skevington SM, social and environment., the objectives of this work are to examine the performance of the WHOQOL-BREF as an integrated instrument, the WHOQOL-BREF is a sound, together with socio-demographic and health status questions. Analyses of internal consistency

Economic and psychologic costs for maternal caregivers of gastrostomy-dependent children

OBJECTIVE: To examine the economic and psychologic costs of care provided by maternal caregivers to children with gastrostomy tube (GT) feedings. STUDY DESIGN: We conducted a 3-site study of primary maternal caregivers of 101 chronically ill…

Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis

Several studies have been conducted on sibling psychosocial adaptation to cancer in a brother or sister, but little is known on how the long-term adaptation of siblings to the illness develops. The concept quality of life has primarily been applied…

Having a brain tumour: A journey through life

Pediatric palliative care: the time has come.

2002

Tags: 2002, Archives Of Pediatrics & Adolescent Medicine, Attitude To Health, Backlog, Child, Child Psychology, Chronic Disease, Communication, Family/psychology, Humans, Hutton N, Journal Article, Longitudinal Studies, Needs Assessment, Palliative Care/methods/psychology/trends, Pediatrics/methods/trends, Professional-family Relations, Quality Of Life, Terminal Care/methods/psychology/trends

The comprehensive care team: a controlled trial of outpatient palliative medicine consultation

BACKGROUND: Little is known about the use of palliative care for outpatients who continue to pursue treatment of their underlying disease or whether outpatient palliative medicine consultation teams improve clinical outcomes. METHODS: We conducted a…

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…

Emotion work in the palliative nursing care of children and young people

The nurse's role in supporting and caring for children and young people with life-limiting illness/conditions and their families requires specialist expertise. This domain can be one of the most emotionally challenging areas of practice. The concept…

Evaluation of health status and health-related quality of life in a cohort of Italian children following treatment for a primary brain tumor

BACKGROUND: This study is a pilot experience aiming to investigate the compliance of an institutional cohort of Italian children treated for a malignant disease and their families in completing the health utilities index2, (HUI2) and the…

The impact on health-related quality of life from non-steroidal anti-inflammatory drugs, methotrexate, or steroids in treatment for juvenile idiopathic arthritis

OBJECTIVE: To assess and compare the impact of medication treatments on health-related quality of life (HRQOL), family function, and medical status in children with juvenile idiopathic arthritis (JIA). METHODS: Fifty-seven children diagnosed with JIA…

Siblings of pediatric cancer patients: the quantitative and qualitative nature of quality of life

This study used both quantitative and qualitative methodologies to assess the pediatric health-related quality of life (HRQOL) in siblings (n = 77) of cancer patients attending summer camp. On quantitative measures (Pediatric Quality of Life…

Palliative care for children and young people: a community paediatric nursing perspective

Community children's nursing services are well placed to provide palliative care for children and young people living with life-limiting conditions. The provision of home support can make a real difference to the quality of life for these families.…

Tags: 2006, Adolescent, Backlog, Child, Community Health Nursing, Health Services Accessibility, Humans, International Journal of Palliative Nursing, Journal Article, Maunder EZ, Palliative Care, Pediatric Nursing, Quality Of Life

Parent and physician perspectives on quality of care at the end of life in children with cancer

PURPOSE: To ascertain parents' and physicians' assessments of quality of end-of-life care for children with cancer and to determine factors associated with high-quality care as perceived by parents and physicians. METHODS: A survey was conducted…

Health-related quality of life among child and adolescent survivors of childhood cancer.

PURPOSE: The main objective was to compare parent-reported health-related quality of life (HRQL) of child and adolescent survivors of childhood cancer to that of controls who had no history of cancer. METHODS: We assessed HRQL of 800 child and…

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,…

Quality of life in chronic illness: perceptions of parents and paediatricians

2005

Tags: 2005, Acute/psychology/rehabilitation Longitudinal Studies Pain Measurement Parents/, Adolescent Arthritis, Archives of Disease in Childhood, at baseline and follow up, Backlog, but also after a period of follow up, differences at follow up did not decrease compared to baseline. CONCLUSION: At the onset of a chronic disease, especially in the subjective attributes. Systematic assessment of quality of life may contribute to better understanding between(TRUNCATED), Gemke RJ, Janse AJ, Journal Article, juvenile idiopathic arthritis, Juvenile Rheumatoid/psychology/rehabilitation Asthma/psychology/rehabilitationAttitude of Health Personnel Child Child, Kimpen JL, Lymphocytic, not only at diagnosis but also after a period of follow up. Differences were particularly clear in the subjective attributes emotion (range of agreement 28-68%) and pain/discomfort (range of agreement 11-33%). In all patient groups, Pediatrics Perception Pneumonia/complications, PedPal Lit, Preschool Chronic Disease/psychology/rehabilitation Cystic Fibrosis/complications/psychology/rehabilitation Emotions Health Status Humans Infant Leukemia, Psychology, Quality Of Life, quality of life of paediatric patients may be misunderstood by healthcare professionals, Sinnema G, the paediatrician asse ssed the patient to have less pain/discomfort in comparison to the parents. Despite a prolonged patient- paediatrician relationship, Uiterwaal CS

One month after diagnosis: quality of life, coping and previous functioning in siblings of children with cancer

BACKGROUND: The aim of the present study is to describe the quality of life (QoL) of siblings of children with cancer and to predict it according to their health before the diagnosis of cancer in the ill child and their ways of coping with the…

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

The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life

PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled…

Measuring end-of-life care outcomes prospectively

This paper discusses the state of the science in prospective measurement in end-of-life research and identifies particular areas for focused attention. Topics include defining the scope of inquiry, evaluating experiences of patients too ill to…

Tags: 2005, Backlog, Data Collection/methods, Health Services Research/methods, Humans, Journal Article, Journal of Palliative Medicine, Outcome and Process Assessment (Health Care)/methods, Palliative Care/psychology/standards, Prospective Studies, Psychometrics/instrumentation/methods, Quality Of Life, Reproducibility of Results, Steinhauser KE, Terminal Care/psychology/standards, United States

Ethical considerations in end-of-life care and research

The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to…

A simple standardized method for VAS measurements in terminally ill patients

2005

Tags: 2005, Backlog, Gootjes JR, Humans, Jansen WJ, Journal Article, Journal of Palliative Medicine, Pain, Pain Measurement/standards, Perez RS, Quality Of Life, Terminally Ill/psychology, Tol-Verhagen CV, United States, Zuurmond WW

Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD).

This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was…

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