Browse Items · Pediatric Palliative Care Library

Accelerated telomere shortening in response to life stress

Numerous studies demonstrate links between chronic stress and indices of poor health, including risk factors for cardiovascular disease and poorer immune function. Nevertheless, the exact mechanisms of how stress gets "under the skin" remain elusive.…

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

An update on the leukodsytrophies

This review centers on important recent advances in the understanding of the role of glial fibrillary acidic protein in Alexander disease and of proteolipid protein in hypomyelinating disorders such as Pelizaeus-Merzbacher and spastic paraplegia. We…

Analgesics for the treatment of pain in children

At the crossroads: making the transition to hospice

OBJECTIVE: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice…

Better for it: how people benefit from adversity

Recently, researchers in several different fields have discovered that people who have experienced seriously adverse events frequently report that they were positively changed by the experience. Respondents in these studies typically have reported a…

Tags: 1999, Adaptation, Backlog, Humans, Internal-External Control, Journal Article, Life Change Events, McMillen JC, P.H.S., Psychiatric, Psychological, Research Support, Social Work, Survivors/psychology, U.S. Gov't

Beyond advance directives: importance of communication skills at the end of life

Patients and their families struggle with myriad choices concerning medical treatments that frequently precede death. Advance directives have been proposed as a tool to facilitate end-of-life decision making, yet frequently fail to achieve this goal.…

Tags: 2005, Advance Directives Colonic Neoplasms/secondary/therapy, Backlog, Communication, Decision Making Humans Interprofessional Relations Liver Neoplasms/secondary/therapy Male Middle Aged Palliative Care Pancreatic Neoplasms/pathology/therapy, Extramural Research Support, JAMA, Journal Article, N.I.H., Non-P.H.S. Research Support, Non-U.S. Gov't Research Support, P.H.S.Terminal Care, PedPal Lit, Physician-Patient Relations Research Support, Tulsky JA, U.S. Gov't

Changes in mothers' basic beliefs following a child's bone marrow transplantation: the role of prior trauma and negative life events

This longitudinal study examined the relation between life stress and basic beliefs about self-worth and the benevolence and meaningfulness of the world among mothers of children undergoing bone marrow transplantation (BMT). One hundred mothers…

Clinician-parent communication during informed consent for pediatric leukemia trials

2005

Tags: 2005, Adolescent Adult Anxiety/prevention & control/psychology Child Child, Backlog, Burant C, Drotar D, Extramural Research Support, Journal Article, Journal of Pediatric Psychology, Kodish E, Miller VA, N.I.H., P.H.S.%X OBJECTIVE: To address the need to describe informed consent in pediatric settings and to identify barriers to parent understanding, parent anxiety and control as a result of the ICC, PedPal Lit, Preschool Clinical TrialsCommunication Decision Making Female Humans InfantInformed Consent Leukemia/therapy Male Parents/psychologyProfessional-Family Relations Research Support, U.S. Gov't

Collaborative clinical research on end-of-life care in pediatric oncology

OBJECTIVES: To present an overview of research into end-of-life (EoL) care for pediatric patients with cancer and to describe research completed by a newly formed collaboration of researchers. DATA SOURCES: Professional group position papers and…

Tags: 2005, Adolescent Adolescent Psychology Attitude of Health Personnel Attitude to Death Attitude to Health Child Child Psychology Clinical Nursing Research/, Attitudes, Backlog, Extramural Research Support, Hinds PS, Journal Article, Lafond DA, Multi-site Ethics, N.I.H., Non-U.S. Gov't Research Support, Nursing Models, Nuss SL, organization & administration Communication Cooperative Behavior Decision Making Forecasting Health Knowledge, P.H.S. Terminal Care/organization & administration, PedPal Lit, Practice Health Priorities Humans Models, Psychological Neoplasms/nursing/psychology Oncologic Nursing/organization & administration Parents/psychology Pediatric Nursing/organization & administration Practice Guidelines Research Design Research Support, Seminars In Oncology Nursing, U.S. Gov't

Combat experience and emotional health: impairment and resilience in later life

War's influence on emotional health includes potential psychological gains as well as losses. In a sample of 149 veterans from longitudinal samples at the Institute of Human Development, University of California, Berkeley, this study explores two…

Complexities in prognostication in advanced cancer: "to help them live their lives the way they want to"

Predicting survival and disclosing the prediction to patients with advanced disease, particularly cancer, is among the most difficult tasks that physicians face. With the de-emphasis of prognosis in favor of diagnosis and therapeutics in the medical…

Continuity of care: a multidisciplinary review

Contractile mechanisms of action of gastroprokinetic agents: cisapride, metoclopramide, and domperidone

We investigated the contractile mechanisms of action of three putative gastroprokinetic agents (cisapride, metoclopramide, and domperidone) on the linear phase of gastroduodenal emptying of solid meals in six healthy conscious dogs. The spatial and…

Death of a child at home or in the hospital: subsequent psychological adjustment of the family

Twenty-four families who had participated in a Home Care Program for children terminally ill with cancer and 13 families of similar children who had died in the hospital completed inventories on parent and sibling personality as well as family…

Decisions about life-sustaining treatment. Impact of physicians' behaviors on the family

BACKGROUND: Despite the growing availability of advance directives, most patients in the intensive care unit lack written directives, and, therefore, consultation with families about treatment decisions remains the rule. In the context of decision…

Demographic factors and their association with outcomes in pediatric submersion injury

OBJECTIVES: To describe the epidemiology and outcomes of serious pediatric submersion injuries and to identify factors associated with an increased risk of death or chronic disability. METHODS: A retrospective database review of 1994-2000…

Tags: 2006, Academic Emergency Medicine, Adolescent Adult African Americans/statistics & numerical data Age Distribution Chi-Square Distribution Child Child, Backlog, Extramural Research Support, Journal Article, Lee LK, Mao C, N.I.H., Newborn Logistic Models Male Massachusetts/epidemiology Multivariate Analysis Near Drowning/epidemiology Odds Ratio Outcome Assessment (Health Care) Prevalence Research Support, P.H.S. Retrospective Studies Risk Factors Sex Distribution Survival Analysis, PedPal Lit, Preschool Drowning/epidemiology Female Hispanic Americans/statistics & numerical data Humans Infant Infant, Thompson KM, U.S. Gov't

Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): a reevaluation of the Life Orientation Test

Research on dispositional optimism as assessed by the Life Orientation Test (Scheier & Carver, 1985) has been challenged on the grounds that effects attributed to optimism are indistinguishable from those of unmeasured third variables, most notably,…

Efficacy of psychotropic drugs for reducing self-injurious behavior in the developmental disabilities

Self-injurious behavior (SIB) is a serious and moderately prevalent problem behavior among developmentally disabled persons, and it frequently leads to treatment with psychotropic medication. The empirical literature relating to the efficacy of…

Tags: 1993, Adrenergic beta-Antagonists/tu [Therapeutic Use], Aman MG, Annals Of Clinical Psychiatry : Official Journal Of The American Academy Of Clinical Psychiatrists, Anti-Anxiety Agents/tu [Therapeutic Use], Antidepressive Agents/cl [Classification], Antidepressive Agents/tu [Therapeutic Use], Antipsychotic Agents/ad [Administration & Dosage], Antipsychotic Agents/pd [Pharmacology], Antipsychotic Agents/tu [Therapeutic Use], Backlog, Comparative Study, Dopamine/me [Metabolism], Female, Human, Journal Article, Lithium Carbonate/tu [Therapeutic Use], Male, Mental Retardation/co [Complications], Mental Retardation/di [Diagnosis], Naloxone/tu [Therapeutic Use], Naltrexone/tu [Therapeutic Use], P.H.S., Receptors, Self-Injurious Behavior/co [Complications], Self-Injurious Behavior/dt [Drug Therapy], Support, Treatment Outcome, U.S. Gov't

Evolution in measuring the quality of dying

PURPOSE: Despite multiple efforts to improve the experience for dying patients, researchers still struggle to identify appropriate outcome measures that assess patients' and families' experiences. If health care systems are to provide excellent,…

Family functioning in school-age children with cystic fibrosis: an observational assessment of family interactions in the mealtime environment

2005

Tags: 2005, affect management, age-matched peers. Families were rated on overall family functioning and on six dimensions of the MICS: task accomplishment, and behavioral control. Moreover, and role allocation. RESULTS: Ratings for families of a child with CF were significantly lower than they were for comparison families on overall family functioning and on four of the six MICS dimensions: communication, as well as child-centered, Backlog, behavior control, Child Cystic Fibrosis/psychology Family/psychologyFeeding Behavior Female HumansInterpersonal Relations Male Observation Research Support, Communication, interpersonal involvement, interventions to help families manage challenges presented during the family meal., Janicke DM, Journal Article, Journal of Pediatric Psychology, Mitchell MJ, Non-U.S. Gov't Research Support, P.H.S.Social Environment Time Factors%X OBJECTIVE: To examine, PedPal Lit, Stark LJ, the family system is negatively affected during mealtime. Dietary interventions need to address family-centered, U.S. Gov't, using direct observation methodology

Five-day courses of irinotecan as palliative therapy for patients with neuroblastoma

2005

Tags: 15 patients had stable disease, 2 (n=3), 2 (n=9), 2005, 22 (n=1 patient), 3 (n=1), 4 (n=2(TRUNCATED), 4 (n=6), 7 (n=1 patient), 7 were not evaluable for response because of concurrent radiotherapy, Adolescent Adult Antineoplastic Agents, although they did not have progressive disease (PD) after receiving 1 (n=10), and 1 patient had a major response. Twenty-one patients had PD after 1 (n=3, and myelosuppressive effects were readily managed. Hospitalizations were limited to three patients with bacteremia. Twenty-three patients had a change in therapy, Backlog, Cancer, Cheung NK, diarrheal, Intravenous Male Nervous System Neoplasms/drug therapy Neuroblastoma/drug therapyPalliative Care Quality of Life Research Support, Journal Article, Kramer K, Kushner BH, Modak S, Non-U.S. Gov't Research Support, or 24 (n=1) courses. The most common reasons for changing treatment were to intensify retrieval therapy or to pursue immunotherapy. Of those 23 patients, P.H.S. Retrospective Studies Treatment Outcome, PedPal Lit, Phytogenic/administration & dosage/adverse effects Camptothecin/administration & dosage/adverse effects/analogs & derivatives Child Child, Preschool Female Humans Infusions, U.S. Gov't

Gastric sensory and motor dysfunction in adolescents with functional dyspepsia

OBJECTIVES: Validated, noninvasive studies were used to compare sensation and motor function of the upper gastrointestinal tract in adolescents with functional dyspepsia (FD) and in control subjects. STUDY DESIGN: Fifteen adolescents with FD and 15…

Health services use and health care expenditures for children with disabilities

OBJECTIVE: To examine health care utilization and expenditure patterns for children with disabilities. METHODS: Secondary data analysis was conducted of the 1999 and 2000 editions of the Medical Expenditure Panel Survey (MEPS), a nationally…

Hospital care for children and young adults in the last year of life: a population-based study

BACKGROUND: To help design population-based pediatric palliative care services, we sought to describe the hospital care received in the last year of life by children and young adults who died. We also determined the proportion with complex chronic…

Husbands and wives as caregivers: antecedents of depression and burden

Contrasting predictors of depression among 101 men and 214 women providing care to spouses suffering from Alzheimer's Disease indicated that the sole predictor for husbands was ill health, whereas for wives less emotional investment was also…

Tags: 1989, Alzheimer Disease/psychology, Backlog, Depression, Home Nursing/psychology, Humans, Interviews, Journal Article, Marriage, Mental Health, P.H.S., Pruchno RA, Regression Analysis, Resch NL, Research Support, Sex Factors, The Gerontologist, U.S. Gov't

In-hospital mortality for children with hypoplastic left heart syndrome after stage I surgical palliation: teaching versus nonteaching hospitals

OBJECTIVES: Teaching hospitals are perceived to provide a higher quality of care for the treatment of rare disease and complex patients. A substantial proportion of stage I palliation for hypoplastic left heart syndrome (HLHS) may be performed in…

Tags: 2006, Adolescent Child Child, Backlog, Berry JG, Cowley CG, Extramural Research Support, Hoff CJ, Journal Article, N.I.H., NewbornPalliative Care Pulmonary Artery/surgery Research Support, P.H.S. Survival Rate United States/epidemiology, Pediatrics, PedPal Lit, Preschool Cohort Studies Comparative Study Heart Ventricles/surgeryHospital MortalityHospitals, Srivastava R, Teaching Humans Hypoplastic Left Heart Syndrome/mortality/surgery Infant Infant, U.S. Gov't

Individual responder analyses for pain: does one pain scale fit all?

The outcomes of clinical trials are based on the mean responses of large numbers of subjects but fail to address inter-individual differences. The molecular mechanisms that underlie pain vary among individuals over time and among different types of…

Tags: 2005, Backlog, Bartoshuk L, Clinical Trials/methods/trends, Comparative Study, Dionne RA, Humans, Journal Article, Mogil J, P.H.S., Pain Measurement/drug effects/methods/standards, Pain/drug therapy/physiopathology, Reproducibility of Results, Research Support, Trends In Pharmacological Sciences, U.S. Gov't, Witter J

Induced sputum inflammatory measures correlate with lung function in children with cystic fibrosis

OBJECTIVE: To validate a sputum induction technique in cystic fibrosis (CF), we examined the relation between airway inflammation and pulmonary function in children with CF by correlating inflammatory indexes in induced sputum with FEV(1). STUDY…

Judging the effectiveness of analgesia for children and adolescents during vaso-occlusive events of sickle cell disease

The effectiveness of analgesia during sickle cell crisis was examined in this descriptive, exploratory study. Pain scores (using the African-American Oucher and the Adolescent Pediatric Pain Tool) and analgesics administered were examined during a…

Ketamine use for reduction of opioid tolerance in a 5-year-old girl with end-stage abdominal neuroblastoma

2005

Tags: 2005, Abdominal Neoplasms/complications Abdominal Pain/etiology/prevention & control Analgesics, Anghelescu DL, Backlog, Dissociative/administration & dosage Child, Extramural Research Support, Journal Article, Journal of Pain and Symptom Management, N.I.H., Non-U.S. Gov't Research Support, Oakes L, Opioid/administration & dosage Anesthetics, P.H.S. Terminal Care/methods Treatment Outcome, PedPal Lit, Preschool Drug Administration Schedule Drug Combinations Drug Tolerance Female Humans Ketamine/administration & dosage Neuroblastoma/complications Palliative Care/methods Research Support, U.S. Gov't

Meaning in caregiving and its contribution to caregiver well-being.

This multivariate study examined the relationship between meaning in caregiving--positive beliefs about the caregiving situation and the self as caregiver--and the psychological well-being of 131 informal caregivers to community-residing frail…

Measurement of the validity of utility elicitations performed by computerized interview

OBJECTIVES: The authors evaluate a measure of the validity of utility elicitations and study the potential effects of invalid elicitations on population utility values. METHODS: The authors used a computerized survey to describe and measure…

Mechanical ventilation in Ontario, 1992-2000: incidence, survival, and hospital bed utilization of noncardiac surgery adult patients

OBJECTIVE: Mechanical ventilation is a common therapy used in caring for critically ill patients, but its epidemiology is poorly understood. We describe population-based, temporal trends in the incidence, survival, and hospital bed utilization of…

Mental and physical health of spouse caregivers: the role of personality

Although personal resources of caregivers, such as coping skills and social support, have been shown to be important in understanding caregiver stress and health outcomes, personality traits have not previously been considered. The purpose of this…

Metadata-driven Delphi rating on the Internet

Paper-based data collection and analysis for consensus development is inefficient and error-prone. Computerized techniques that could improve efficiency, however, have been criticized as costly, inconvenient and difficult to use. We designed and…

Tags: 2005, Backlog, Computer Methods And Programs In Biomedicine, Delphi Technique, Deshpande AM, Guidelines, Internet, Journal Article, Nadkarni PM, P.H.S., Research Support, Shiffman RN, Software, U.S. Gov't

Mothers' perceptions of benefit following pediatric stem cell transplantation: a longitudinal investigation of the roles of optimism, medical risk, and sociodemographic resources

BACKGROUND: This longitudinal study investigated the course and predictors of benefit finding among 144 mothers of children undergoing hematopoietic stem cell transplantation (HSCT), a severely stressful and life-threatening medical procedure.…

Mutations in capillary morphogenesis gene-2 result in the allelic disorders juvenile hyaline fibromatosis and infantile systemic hyalinosis

Juvenile hyaline fibromatosis (JHF) and infantile systemic hyalinosis (ISH) are autosomal recessive syndromes of unknown etiology characterized by multiple, recurring subcutaneous tumors, gingival hypertrophy, joint contractures, osteolysis, and…

National hospice study analysis plan

Since the founding of the first hospice in the United States in 1974, the number of health care organizations providing hospice services has grown rapidly. In 1978, the U.S. General Accounting Office identified 59 operational hospices [1]. A survey…

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